Your DNA, your concerns: Public attitudes toward donation of genomic data for research in four Latin American countries

Your DNA, your concerns: Public attitudes toward donation of genomic data for research in four Latin American countries | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Your DNA, your concerns: Public attitudes toward donation of genomic data for research in four Latin American countries Antonella Romero-Ramírez, Ronald Alfaro-Redondo, Gabriel Macaya-Trejos, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8226828/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted You are reading this latest preprint version Abstract Background "Your DNA, Your Say" is an anonymous online survey covering attitudes towards genomic and medical data sharing for research purposes. This study aims to identify factors that influence willingness to donate genetic information in Latin America and explore concerns regarding data donation. Methods Responses to the “Your DNA, Your Say” survey from participants in Argentina, Brazil, Costa Rica, and Mexico were analyzed. We created three indexes: a. “Willingness to donate” reflects disposition towards data sharing, b. “Know Me” measures levels of concern if genetic/medical information becomes known to others, c. “Against Me” measures levels of concern regarding direct negative consequences of loss of anonymity. Regression analyses were used to explore the relationship between sociodemographic variables and the three indexes. Results Willingness to donate data is higher when profit is not involved. Concerns measured by the “Know Me” index are lower among women and individuals with a high willingness to donate, and higher for individuals with tertiary education. For the “Against Me” index, concern decreases with age and willingness to donate, and values are higher for people that have children, are religious, and have university education. In general, young age, having children, tertiary education level, and showing reduced levels of concern are associated with a higher willingness to donate genetic information. Conclusions This is one of the first studies exploring what shapes attitudes toward genetic data sharing in Latin America. This knowledge can guide strategies to ensure inclusion and diversity in future genetic studies. Data sharing public attitudes Latin America ELSI genetics Figures Figure 1 Figure 2 Figure 3 Figure 4 Introduction A growing volume of genomic data is being generated in the field of human health, facilitated by the reduction in costs associated with various sequencing techniques, including both whole genome sequencing (WGS) and whole exome sequencing (WES). Future cost reductions are anticipated with the development of improved sequencing devices that offer greater read density and read length per chip (Teufel & Sobetzko, 2022 ). The increasing relevance of access to such massive sequencing data lies in its potential use across various contexts, addressing numerous questions in both biological and public health fields, and thus providing a rich resource for subsequent scientific analysis and future clinical applications. Large-scale genomic and medical data generated by research groups can be utilized in specific contexts such as public health and scientific research. It is estimated that by 2020, global health data reached 2,314 exabytes (10^18 bytes), and genomic data is projected to reach 25 petabytes (10^15 bytes) by 2030. The use of big data holds the potential for greater "precision" in public health. Increased individual-level data can contribute to improved population health by allowing the integration of various social and environmental risk factors through large-scale data analysis (Khoury et al., 2020 ). In order to use this valuable resource, medical and genomic data is commonly stored in repositories and/or biobanks. This facilitates the handling of carefully curated information and annotated biological samples for various applications by researchers from multiple scientific fields, thereby maximizing its utility and relevance. As more well-characterized, high-quality samples and associated data from diverse populations become available through biobanks and repositories, research will progress more rapidly and have a more significant impact on contemporary medical care (Brancato et al., 2024 ; Gallagher et al., 2025 ). Given the sensitive nature of medical-genetic data, the use of such information requires that individual informed consent has been obtained. Because access to such data should also consider social perceptions and opinions regarding donation of personal medical and genomic data across cultures, the Participant Values Task Team of the Regulatory and Ethics Group at GA4GH, developed the "Your DNA, Your Say" survey (Middleton et al., 2018 ). This online anonymous survey was designed to explore, through various questions, the opinions and perceptions of the general public regarding the access, sharing, and donation of their genetic and medical data to others such as doctors, non-profit researchers, and for-profit researchers; perceived harms and fears; expectations regarding the treatment of shared data; and factors influencing trustworthiness. Respondents were presented with a list of hypothetical scenarios, potential problems, or concerns that could arise if their genetic information were linked to their personal data. Results from the application of this and other surveys have shown that decisions and perceptions are influenced by several sociodemographic factors such as age, gender, educational level, religiosity, marital status, whether the person has children, and country of origin, among others (Adu et al., 2021 ; Baines et al., 2024 ; Brall et al., 2021 ; Chavarria-Soley et al., 2021 ; Goodman et al., 2017 ; King et al., 2012 ; Lee et al., 2022 ; Mählmann et al., 2018 ; Milne et al., 2019; Sanderson et al., 2017 ; Sanz de Acedo Lizárraga et al., 2007; Tosoni et al., 2021 ; Vidgen et al., 2020 ; Voigt et al., 2020 ). In this paper, we present the results of the survey in four Latin American countries (Argentina, Brazil, Costa Rica, and Mexico). For this, we created three indexes (one for willingness to donate and two for concerns regarding donation) based on questions from the survey, which we believe can help in the understanding of factors associated with attitudes regarding donation of genetic/medical information. To the best of our knowledge, this is the first study to analyze perspectives and concerns on genetic data sharing of individuals from Latin American countries, and in relation to other regions of the world. We believe these findings contribute to a better understanding of what drives people to share genetic and medical data and can support the development of data-sharing policies for international biomedical research that respect sociodemographic, cultural and historical differences. Methods The Instrument The present study is based on the analysis of the responses from Argentina, Brazil, Costa Rica, and Mexico to the cross-sectional anonymous survey "Your DNA, Your Say". The complete survey can be accessed at www.YourDNAYourSay.org , where it is available in 18 languages. Detailed information regarding specific aspects of the survey can be found as extended data at the official project website www.YourDNAYourSay.org (Middleton et al., 2018 ). The main aim of the survey is to explore, through various questions, the opinions and perceptions of the general public regarding the access, sharing, and donation of their genetic and medical data to third parties. Through 29 questions, the participants are asked about general socio demographic information, their internet footprint, familiarity with terms such as genetics and genomics, opinions on who should have access to genetic and medical data, perceived risks and concerns, expectations for how shared data should be handled, and the factors that influence their trust in data sharing and security. Completing the survey takes approximately 15 to 20 minutes. Recruitment of Participants Recruitment of participants followed national and international bioethical regulations for anonymous surveys. Participants from Argentina (N = 919), Brazil (N = 1349), and Mexico (N = 1347) were recruited via the market research company Dynata (formerly ResearchNow). In Costa Rica, 469 individuals were surveyed using a mixed strategy, including social media posts, WhatsApp messages through a local marketing company, phone calls using the national database of cell phone numbers, and personal interviews. Statistical Analysis For this analysis, we included the following sociodemographic factors: individuals' age recorded in 10-year intervals starting from age 21 (and a separate category for individuals 18–20 years of age); whether they have children; their relationship status (‘Divorced’, ‘Separated’, ‘Single’, ‘Widowed’, ‘Married/Civil partnership/Living together’); the highest level of education attained (‘Tertiary’, ‘Secondary’, ‘Primary’, or ‘Other’); and self reported religiosity (‘A religious person’ or ‘Not a religious person’). Also included in the analysis was whether the participants would donate their ‘anonymous’ DNA and medical information for research purposes (with a glossary definition clarifying that complete anonymity is not achievable) to three categories of recipients: (a) to medical doctors, (b) to nonprofit researchers, and (c) to for-profit researchers. In each case, the possible responses regarding data donation preference were (a) “No”, (b) “I’m not sure”, or (c) “Yes”. Responses from participants were used to create an index named “Willingness to donate” . For each category of recipient of genetic data (medical doctor, non-profit researcher, for-profit researcher), the “Unwilling to donate”, “Not sure”, and “Willing to donate” responses were respectively assigned a score of 0, 1, or 2. A person’s scores for each category were added and the variable was then standardized to a 0-100 scale, where higher values indicate a greater willingness to donate genetic information. We also analyzed the section in which participants were presented with a list of hypothetical scenarios, potential problems, or concerns that could arise if their genetic information were linked to their personal data. The list of hypothetical concerns was generated from pilot work, academic literature, and the experience of the Global Alliance for Genomics and Health experts who designed the survey (Middleton et al. 2018 ). For each item on the list, participants had to select one of four possible answers: “Not bothered”, “I’m not sure”, “Concerned”, or “Very concerned”. We used factor analysis to find correlated items and then created two “ Concern Indexes ” intended to capture different features of this concern. The first one, called “ Know me ”, refers to the fear of losing anonymity of personal data. Five potential concerns from the possible scenarios were included: 1. My friends potentially knowing something about me that I hadn’t chosen to tell them; 2. My family potentially knowing something about me that I hadn’t chosen to tell them; 3. My government potentially knowing something about me that I hadn’t chosen to tell them; 4. Police potentially knowing something about me that I hadn’t chosen to tell them; 5. Marketing companies targeting me to sell me products. The original scale (0 “Not bothered”, 1 “I am just not sure”, 2 “Concerned”, 3 “Very concerned”) was normalized and standardized to a 0-100 metric, with higher values reflecting higher levels of concern. The average value of the Know me Index is 47 points. The Cronbach’s Alpha value for all 5 items is 0.76. The second Index was named “ Against me ”. In this case, the index corresponds to concerns related to direct consequences (discrimination, incrimination in crimes, etc) for participants. Seven potential concerns were included in the index: 1. Being stigmatised and labelled in some way online; 2. Being cloned; 3. My DNA being copied and then planted at the scene of a crime; 4. Health or life insurance companies using the information to discriminate against me; 5. Employers using the information to discriminate against me; 6. Upsetting my genetic relatives (because my DNA information is similar to their DNA information); 7. Ethnic identification and racial discrimination. Like in the previous case, the original scale (0 “Not bothered”, 1 “I am just not sure”, 2 “Concerned”, 3 “Very concerned”) was normalized and standardized to a 0-100 metric. The average value of the Against me Index is 68 points. Cronbach’s Alpha value of all 7 items is 0.84. Two sets of statistical models (four in total) were used to analyze the correlates related to individuals’ concerns regarding the donation of genetic data. Using the “Willingness to donate” index as an independent variable together with a set of sociodemographic items like age, gender, country, education level, having children, marital status, and religiosity, we ran two regression models to study the relationship between these variables and the levels of concern regarding potential loss of anonymity (indexes “Know me” and “Against me” ). Additionally, the analysis was repeated with the “Know me” and “Against me” concern indexes and sociodemographic factors as independent variables, and “Willingness to donate” as the dependent variable. In this case the purpose was to understand how individuals’ concerns and sociodemographic factors impact the disposition to share genetic data. Results In the present study, we have analyzed responses to the Your DNA, Your say survey from four Latin American countries: Argentina (N = 919), Brazil (N = 1349), Costa Rica (N = 476), and Mexico (N = 1347). A summary of the sociodemographic characteristics of the sample for each country is presented in Table 1. Table 1 Sociodemographic characteristics of respondents of the “Your DNA Your Say” Survey from Argentina, Brazil, Costa Rica, and Mexico Country Argentina Brazil Costa Rica Mexico Variable Categories Total (n=919) Total (n=1349) Total (n=469) Total (n=1347) N % N % N % N % Age 30 and under 233 25.35 412 30.54 177 37.74 409 30.36 31-40 192 20.89 301 22.31 112 23.88 337 25.02 41-50 159 17.30 268 19.87 80 17.06 293 21.75 51-60 197 21.44 237 17.57 58 12.37 181 13.44 Over 60 138 15.02 131 9.71 42 8.96 127 9.43 Missing 0 0 0 0 0 0 0 0 Gender Female 485 52.77 723 53.6 282 60.13 694 51.52 Male 434 47.33 626 46.4 175 37.31 653 48.48 Missing 0 0 0 0 12 2.56 0 0 Children No 282 30.69 458 33.95 225 47.97 503 37.34 Yes 620 67.46 872 64.64 231 49.25 828 61.47 Missing 17 1.85 19 1.41 13 2.77 16 1.19 Education Tertiary 589 64.09 874 64.79 274 58.42 1159 86.04 Secondary 280 30.47 366 27.13 135 28.78 103 7.65 Primary 18 1.96 53 3.93 48 10.23 4 0.30 Other 32 3.48 56 4.15 12 2.56 80 5.94 Missing 0 0 0 0 0 0 1 0.07 Religiosity Not a religious person 402 43.74 336 24.91 199 42.43 504 37.42 A religious person 516 56.15 1013 75.09 270 57.57 843 62.58 Missing 1 0.11 0 0 0 0 0 0 Relationship Married / Civil partnership / Living together 562 61.15 827 61.3 201 42.86 832 61.77 Divorce / Single / Separated / Widowed 356 38.74 522 38.7 268 57.14 515 38.23 Missing 1 0.11 0 0 0 0 0 0 Participants were asked about their willingness to donate their anonymized genetic data and medical information to a database accessible to different research groups. These groups included the following three categories: medical doctors, non-profit researchers, and for-profit researchers. As can be seen in Fig. 1 (Fig. 1 ), some participants are willing to donate their genetic data to all potential recipients, while others are consistently unwilling to donate. Alternatively, for an important proportion of participants, willingness to donate information is higher when recipients are medical doctors or non-profit researchers, and drops when potential recipients of their genetic and medical information are for-profit researchers. The response flow shows that most participants who answered "Yes" to donating their data to medical researchers tend to also be willing to donate to non-profit researchers. However, there is a noticeable shift toward "I'm just not sure" and "No" in the case of for-profit researchers, indicating a change in opinion toward indecision or rejection. Next, we restricted our analysis to only participants who are willing to donate their personal genetic/medical information for research, and are sure of their opinion. The two most frequent categories of responses in these individuals are: a) would donate to medical doctors and non-profit researchers but not to for-profit researchers, and b) would donate to the three potential recipients of the data. We observed significant variation in distribution of the four Latin American countries between those two types of response (X2 = 10.7, d.f.=3, p = 0.01; Fig. 2 ). The proportion of individuals who chose to donate only for non-profit use is highest in Costa Rica and lowest in Brazil, with Mexico and Argentina presenting intermediate values. One of the sections of the survey explores the participants’ concerns regarding donation of their genetic/medical data in case anonymity would be lost. For each of 12 potential concerns, respondents chose which ones concerned them. As described in the methods section, we used this information to create two “Concern Indexes” for our study: the “Know me” index, and the “Against me” index. The “Know me” index groups concerns related to other people knowing something about participants that they do not wish to share. Meanwhile, the "Against me” index groups concerns related to direct consequences (discrimination, incrimination in crimes, etc) for participants. We used a regression analysis to study the effect of sociodemographic factors, as well as the “Willingness to donate” variable on scores for both Concern Indexes. Table 2 summarizes these results. Table 2 Results for regression analysis exploring the effect of factors influencing levels of concern in respondents from Argentina, Brazil, Costa Rica and Mexico in the case of loss of anonymity of their personal data Dependent variable: “Know Me” Index Dependent variable: “Against Me” Index Age -0.620 (0.34) -1.031** (0.32) Gender -1.922* (0.90) 1.567 (0.84) Children 1.587 (0.98) 2.954** (0.92) Country 1.177* (0.48) 0.945* (0.45) Religion -1.595 (0.95) 3.017*** (0.89) Education 2.904*** (0.41) 1.591*** (0.38) Marital Status -0.155 (0.51) 0.169 (0.47) Willingness to donate -2.296*** (0.24) -1.319*** (0.22) Constant 45.982*** (3.48) 59.257*** (3.26) R-sqr 0.037 0.020 Dfres 3929 3929 BIC 37554.0 37038.9 Note. The asterisk indicates: * p < 0.05, ** p < 0.01, *** p < 0.001 For the “Know me” index, levels of concern are lower in women compared to men, and in people with high willingness to donate their information. Higher levels of concern are seen in Mexico than in the other countries, as well as in individuals with higher education levels. In the case of the “Against me” index, levels of concern are lower in older individuals, and in people with high willingness to donate their information. Meanwhile, factors related to higher concerns are having children, being religious, and as in the previous index ( “Know me” ), coming from Mexico, and having a higher education level. Given that responses from all participating countries in the “Your DNA, Your Say” survey are available, we decided to explore each country’s mean scores for the “Know me” and “Against me” indexes. As can be seen in Fig. 3 (Fig. 3 ), Japan and Germany stand out as the countries with the highest scores for concern for both indexes. On the opposite side of the spectrum, Sweden shows particularly low levels of concern. Among Latin American countries, Argentina, Brazil and Costa Rica are grouped close together in their level of concern, which is on the lower end of the distribution. Meanwhile, Mexican individuals are more concerned both with other people knowing information about them, and potential negative consequences. We then used regression analysis to explore factors influencing willingness to donate genetic or medical information. For this, we used the “Willingness to donate” variable we created as the dependent variable. We used two models which both include the same list of sociodemographic variables and differ in the “Concern Index” included ( “Know me” in model 3, “Against me” in model 4). Age, having children, education level and Concern Index scores are all significantly associated with willingness to donate genetic or medical information. Our results are summarized in Table 3 . Table 3 Results for regression analysis exploring the effect of factors influencing willingness to donate medical or genetic data for research in respondents from the survey from Argentina, Brazil, Costa Rica, and Mexico M3: Dependent variable: Index of willingness to donate genetic information M4: Dependent variable: Index of willingness to donate genetic information Age -3.284*** (0.38) -3.343*** (0.38) Gender 0.849 (1.01) 1.376 (1.01) Children 8.524*** (1.09) 8.713*** (1.09) Country 0.646 (0.53) 0.558 (0.54) Religion 0.211 (1.07) 0.837 (1.08) Education 2.944*** (0.45) 2.663*** (0.46) Marital Status 0.194 (0.57) 0.243 (0.57) Know Me -0.172*** (0.02) Against -0.114*** (0.02) Constant 58.933*** (3.86) 58.561*** (3.97) R-sqr 0.055 0.041 Dfres 3929 3929 BIC 38428.6 38487.3 Note. The asterisk indicates: * p < 0.05, ** p < 0.01, *** p < 0.001 In particular, younger individuals, people with children, and people with tertiary education level are more likely to be willing to donate their medical/genetic information for use in research (Fig. 4 ). Conversely, older individuals and participants with higher levels of concern in the “Know me” and “Against me” indexes are less willing to share their information with others. Country of origin, gender, religiosity and marital status do not significantly influence willingness to donate genetic and medical information. Discussion In this paper we present results of the "Your DNA Your Say" survey for four Latin American countries, Argentina, Brazil, Costa Rica, and Mexico. We had previously reported preliminary results from a study conducted with a pilot sample from Costa Rica (Chavarria-Soley et al., 2021 ); for the present study, we recruited a new larger sample from Costa Rica to compare with the results from the other 3 countries. Additionally, we analyze the results from the 4 countries as a unified entity to compare with other countries of the world. This research expands the analysis to provide a more comprehensive and comparative view of attitudes and concerns toward genetic data and privacy in the Latin American context. The Latin American countries included in our sample appear to share a similar viewpoint regarding data donation to third parties. In general, there is a high willingness to share genetic and medical data for research. When considering the overall willingness to share personal genetic and/or medical information we observed similar attitudes towards medical doctors and non-profit researchers (over 60% of participants willing to donate their information to these two categories of recipients), suggesting that these actors are perceived in a comparable manner. In contrast, individuals are less in favor of sharing their personal genetic and/or medical information with for-profit researchers (37% of participants willing to share their information). The reduced willingness to donate medical and genetic data in case of for-profit use of the information has been previously reported. Benevento et al. ( 2023 ) found that patients are generally willing to share their Protected Health Information (PHI) primarily with providers directly involved in their medical care, but commercial use significantly reduces the willingness to share such information (Benevento et al., 2023 ). Furthermore, on a global scale, scientific institutions are generally regarded as more trustworthy than governments or commercial entities (Pronicki et al., 2023 ). Evidence from several countries shows that individuals are more likely to share their genetic and medical information with nonprofit researchers, such as public institutions, hospitals, and universities (Cascini et al., 2024 ; Chavarria-Soley et al., 2021 ; Mählmann et al., 2018 ; Milne et al., 2021 ). Medical and/or genetic data donation is often seen as an altruistic act, which can explain the unfavorable perception linked to for-profit use of this information (Trinidad et al., 2010 ; Levitt & Weldon, 2005 ; Nunes Vilaza et al., 2021 ). Compared to Argentina, Costa Rica and Mexico, Brazil presents a slightly higher proportion of individuals willing to donate their data regardless of whether the recipient entity operates for profit or not. The lower aversion to profit reflected in the responses of participants of Brazil may in part be due to the particular interaction between universities and private companies in Brazil. The Brazilian government has made efforts to create state research agencies and foster technological innovation programs between companies and universities and research institutes, in which projects are funded with both public and private funds. Furthermore, the existence of the Innovation Law in Brazil has fostered public-private partnerships that protect both intellectual property and technology transfer between these two sectors. (Rapini et al., 2019 ). We created the “Know me” and “Against me” indexes, as well as the “ Willingness to donate” variable in order to understand how different factors influence people’s perception of genetic data donation, which could be useful for studies in other countries. As expected, there is a link between level of concern and willingness to donate. A greater willingness to donate genetic information is associated with lower scores in the “Know me” and “Against me” Concern Indexes. This suggests that individuals who worry less about what other people know about them and perceive less risk associated with the potential uses of that information tend to be more willing to share their genetic information. When exploring the factors that influence levels of concern and willingness to donate data, we find that higher levels of education are associated both with more concern (for both indexes) regarding the potential impact of loss of anonymity, and with more willingness to donate personal medical or genetic information. This seemingly contradictory result might suggest that individuals with higher educational levels have greater knowledge of the risks and benefits of sharing genetic information, but often decide that the benefits outweigh the potential risks. A correlation between high level of education and willingness to donate medical and genetic data has been previously reported in results of the Your DNA Your Say survey for Germany, United Kingdom, United States of America, Canada and Australia (Milne et al., 2019; Voigt et al., 2020 ). Meanwhile, in other countries like Italy, an education below the tertiary level has been associated with a lower overall willingness to share this data. (Romano et al., 2021 ). Higher educational attainment has also been reported to correlate with a positive attitude towards genetic testing (Balck et al., 2009 ), and willingness to donate medical or genetic data (Baines et al., 2024 ; Brall et al., 2021 ; Broekstra et al., 2022 ; Goodman et al., 2017 ; Lee et al., 2022 ; Milne et al., 2019). Regarding religiosity, we find that religious individuals are more concerned with the potential direct consequences of sharing genetic information than non-religious persons. In a similar manner, other studies have found lower religiosity to be associated with a greater willingness to share data compared to religious participants (Baines et al., 2024 ; Brall et al., 2021 ; Sanderson et al., 2017 ). The relationship between religiosity and an individual's willingness to donate, according to Domaradzki & Walkowiak ( 2024 ), can serve as a double-edged sword. Religiosity may boost participation by appealing to altruism and the greater good, but it can also hinder it if donors fear research could conflict with their values. Country of origin shows a significant but slight effect on levels of concern, indicating that cultural differences between countries may influence attitudes toward genetic information. In particular, Mexican individuals had higher concern scores in both the “Know me” and “Against Me” indexes, as is evident in Fig. 3 (Fig. 3 ). However, we found no association between country of origin and willingness to donate medical and genetic data. In our sample, having children is associated both with greater concern about potential direct negative consequences, and also with an increased willingness to donate personal medical and genetic data for research purposes. Having children has been previously linked to a higher willingness to allow release of genomic data to public data banks (Etchegary et al., 2023 ). Even though parental responsibility might lead to greater concern about the risks of sharing information, it has been proposed that the high willingness to donate genetic and medical data among individuals with children can be attributed to a desire to positively impact the quality of life of present and future generations (Baines et al., 2024 ; Brall et al., 2021 ; Kettis-Lindblad et al., 2006 ). Regarding the influence of age on perception of genetic data sharing, in our Latin American sample older individuals are less concerned with potential negative consequences directly affecting them in case of loss of anonymity, but -in agreement with previous findings- are in general less willing to donate their genetic information than younger people (Brall et al., 2021 ; Goodman et al., 2017 ). There are conflicting reports on the influence of age on willingness to donate personal information, which has been suggested to be due to an incomplete exploration of the interrelated sociodemographic factors which influence the willingness to share health information (Naeem et al., 2022 ). Some studies have reported that older people are more comfortable with sharing health information (Brown et al., 2016 ; Mählmann et al., 2018 ; Vidgen et al., 2020 ), while others found them to be less willing as older users are less comfortable with information technology and, therefore, less likely to share health information (Cocosila & Archer, 2014 ). Meanwhile, other studies have found no relationship between age and sharing health information for research purposes or to improve clinical care (Kerath et al., 2013 ; Spooner et al., 2017 ). We took advantage of the availability of the complete YDYS dataset and analyzed the levels of concern captured by the “Know Me” and “Against Me” indexes for all participating countries in the YDYS survey. Individuals in Japan and Germany share a high level of concern of both knowledge others may gather about them, and potential consequences against them, in case the anonymity of their data would be lost. Sweden shows particularly low levels of concern for both indexes, while Latin American countries are located between these extremes, with a tendency towards low concern values. In Germany, the concept of informational self-determination grants individuals the authority and responsibility to carefully decide how their personal data are used, leading to an attempt to balance the protection of personal rights with benefits for others, possibly resulting in greater caution in data sharing for research purposes (Voigt et al., 2020 ). In Japan, data privacy legislation is very strict; a recent amendment to Japan's Personal Information Protection Law has tightened restrictions on the use of personal/medical data, requiring that information be used only for the specific purposes agreed upon, and thus restricting use of previously collected data (Saeki, 2022 ). In this context, high levels of concern regarding the potential consequences of loss of anonymity of genetic data are expected. Conversely, in Sweden, a study on trust and privacy in healthcare revealed that a large majority (81.9%) of respondents expressed high levels of trust in the healthcare system's ability to protect electronic patient data (Belfrage et al., 2022 ). This trust in data protection could in part explain the low levels of concern for both the “Know Me” and “Against Me” indexes in respondents of the YDYS survey . Studying the attitudes of Latin American populations towards medical and genetic data donation is crucially relevant for research, since perception of potential participants will influence the consent process. Particular initiatives, such as the establishment of biobanks, also depend on the willingness of individuals of the general public to participate. Currently, with the evident need to highlight population diversity, Latin America is experiencing a significant surge in the establishment of biobanks and large scale genomic projects across countries such as Mexico, Brazil, Chile, and Argentina (Canario, 2021 ; Reis & Pêgo-Fernandes, 2022 ; Rivera-Alcántara et al., 2024 ; Sohail et al., 2023 ; Valdés & Lecaros, 2024 ). These initiatives are designed to advance research and development in crucial areas, contributing to both scientific inquiry and public health. Knowledge of the factors influencing donation of medical/genomic data in these populations can be helpful in achieving successful and representative recruitment. In general, in the Latin American countries included in our study there is a positive attitude towards genetic data donation. Our results suggest that young individuals with university education are particularly likely to be willing to participate in research efforts. Different strategies can be implemented in order to improve participation of individuals from other demographic groups. Additionally, our findings underscore the importance of considering both demographic factors and public attitudes and perceptions when developing policies and strategies related to genetic information. It is reasonable to assume that increasing public awareness about the potential uses of genetic information, as well as its associated risks and benefits, would positively impact individuals' willingness to share their genetic data. Declarations Statement of Ethics Approval The online survey is anonymous; no personally identifiable data (including no IP addresses) were gathered. Participants are informed that their consent is given when they start answering the questions, and they can stop completing the survey at any stage. The online project is physically based at the Wellcome Genome Campus with all data collected and stored in encrypted files at the Wellcome Sanger Institute in Cambridge. The project passed ethical review by the Human Materials and Data Management Committee of the Wellcome Sanger Institute (Registration number: 16/029) as well as legal review to ensure that it was compliant with ethical and legal standards for participant involvement and data collection and storage. Compliance with Ethical Standards Conflict of Interest All the authors declare that they have no conflict of interest. Ethical approval Research involving human participants and/or animals Funding This work was funded in part by Wellcome grant [206194] paid to the Society and Ethics Research Group, Connecting Science, and by the University of Costa Rica. Author Contribution All authors contributed to the study conception and design. HR and GC-S initiated the collaboration with the UK team (AM, LR, RM). Data curation was performed by GC-S. Formal analysis was done by GC-S and RA-R. AR-R, GC-S and RA-R participated in visualization. AM was in charge of funding acquisition for the Your DNA, Your Say survey. The first draft of the manuscript was written by AR-R, GC-S, RA-R and HR. AR-R, GC-S, HR, RA-R, and GM-T commented on previous versions of the manuscript. All authors read and approved the final manuscript. Acknowledgement Participants of the Your DNA Your Say survey. Data Availability The data from the "Your DNA, Your Opinion" surveys that support the findings of this study are available from the corresponding author upon reasonable request. References Adu, E. K., Mills, A., & Todorova, N. (2021). Factors influencing individuals’ personal health information privacy concerns. A study in Ghana. Information Technology for Development , 27 (2), 208-234. https://doi.org/10.1080/02681102.2020.1806018 Baines, R., Stevens, S., Austin, D., Anil, K., Bradwell, H., Cooper, L., Maramba, I. D., Chatterjee, A., & Leigh, S. (2024). Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review. Journal of Medical Internet Research , 26 (1), e50421. https://doi.org/10.2196/50421 Balck, F., Berth, H., & Meyer, W. (2009). Genetic testing and molecular biomarkers. Genetic testing and molecular biomarkers , 6 , 743-750. Belfrage, S., Helgesson, G., & Lynøe, N. (2022). Trust and digital privacy in healthcare: A cross-sectional descriptive study of trust and attitudes towards uses of electronic health data among the general public in Sweden. BMC Medical Ethics , 23 (1), 19. https://doi.org/10.1186/s12910-022-00758-z Benevento, M., Mandarelli, G., Carravetta, F., Ferorelli, D., Caterino, C., Nicolì, S., Massari, A., & Solarino, B. (2023). Measuring the willingness to share personal health information: A systematic review. Frontiers in Public Health , 11 . https://doi.org/10.3389/fpubh.2023.1213615 Brall, C., Berlin, C., Zwahlen, M., Ormond, K. E., Egger, M., & Vayena, E. (2021). Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey. PLOS ONE , 16 (4), e0249141. https://doi.org/10.1371/journal.pone.0249141 Brancato, V., Esposito, G., Coppola, L., Cavaliere, C., Mirabelli, P., Scapicchio, C., Borgheresi, R., Neri, E., Salvatore, M., & Aiello, M. (2024). Standardizing digital biobanks: Integrating imaging, genomic, and clinical data for precision medicine. Journal of Translational Medicine , 22 (1), 136. https://doi.org/10.1186/s12967-024-04891-8 Broekstra, R., Aris-Meijer, J. L., Maeckelberghe, E. L. M., Stolk, R. P., & Otten, S. (2022). Motives for withdrawal of participation in biobanking and participants’ willingness to allow linkages of their data. European Journal of Human Genetics , 30 (3), 367-377. https://doi.org/10.1038/s41431-021-00997-5 Brown, S. M., Bell, S. K., Roche, S. D., Dente, E., Mueller, A., Kim, T.-E., O’Reilly, K., Lee, B. S., Sands, K., & Talmor, D. (2016). Preferences of Current and Potential Patients and Family Members Regarding Implementation of Electronic Communication Portals in Intensive Care Units. Annals of the American Thoracic Society , 13 (3), 391-400. https://doi.org/10.1513/AnnalsATS.201509-638OC Canario, J. A. (2021). Comparative analysis of regulatory framework on biobanking to inform policymakers in Central America and the Dominican Republic. Wellcome Open Research , 6 , 95. https://doi.org/10.12688/wellcomeopenres.16547.1 Cascini, F., Pantovic, A., Al-Ajlouni, Y. A., Puleo, V., Maio, L. D., & Ricciardi, W. (2024). Health data sharing attitudes towards primary and secondary use of data: A systematic review. eClinicalMedicine , 71 . https://doi.org/10.1016/j.eclinm.2024.102551 Chavarria-Soley, G., Francis-Cartin, F., Jimenez-Gonzalez, F., Ávila-Aguirre, A., Castro-Gomez, M. J., Robarts, L., Middleton, A., & Raventós, H. (2021). Attitudes of Costa Rican Individuals Towards Donation of Personal Genetic Data for Research. Personalized Medicine , 18 (2), 141-152. https://doi.org/10.2217/pme-2020-0113 Cocosila, M., & Archer, N. (2014). Perceptions of chronically ill and healthy consumers about electronic personal health records: A comparative empirical investigation. BMJ Open , 4 (7), e005304. https://doi.org/10.1136/bmjopen-2014-005304 Domaradzki, J., & Walkowiak, D. (2024). When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes. Journal of Religion and Health , 63 (2), 1178-1213. https://doi.org/10.1007/s10943-023-01932-2 Etchegary, H., Darmonkov, G., Simmonds, C., Pullman, D., & Rahman, P. (2023). Public attitudes towards genomic data sharing: Results from a provincial online survey in Canada. BMC Medical Ethics , 24 , 81. https://doi.org/10.1186/s12910-023-00967-0 Gallagher, C. S., Ginsburg, G. S., & Musick, A. (2025). Biobanking with genetics shapes precision medicine and global health. Nature Reviews Genetics , 26 (3), 191-202. https://doi.org/10.1038/s41576-024-00794-y Goodman, D., Johnson, C. O., Bowen, D., Smith, M., Wenzel, L., & Edwards, K. (2017). De-identified genomic data sharing: The research participant perspective. Journal of Community Genetics , 8 (3), 173-181. https://doi.org/10.1007/s12687-017-0300-1 Kerath, S. M., Klein, G., Kern, M., Shapira, I., Witthuhn, J., Norohna, N., Kline, M., Baksh, F., Gregersen, P., & Taioli, E. (2013). Beliefs and attitudes towards participating in genetic research – a population based cross-sectional study. BMC Public Health , 13 , 114. https://doi.org/10.1186/1471-2458-13-114 Kettis-Lindblad, Å., Ring, L., Viberth, E., & Hansson, M. G. (2006). Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? European Journal of Public Health , 16 (4), 433-440. https://doi.org/10.1093/eurpub/cki198 Khoury, M. J., Armstrong, G. L., Bunnell, R. E., Cyril, J., & Iademarco, M. F. (2020). The intersection of genomics and big data with public health: Opportunities for precision public health. PLOS Medicine , 17 (10), e1003373. https://doi.org/10.1371/journal.pmed.1003373 King, T., Brankovic, L., & Gillard, P. (2012). Perspectives of Australian adults about protecting the privacy of their health information in statistical databases. International Journal of Medical Informatics , 81 (4), 279-289. https://doi.org/10.1016/j.ijmedinf.2012.01.005 Lee, C. M. Y., Thomas, E., Norman, R., Wells, L., Shaw, T., Nesbitt, J., Frean, I., Baxby, L., Bennett, S., & Robinson, S. (2022). Educational attainment and willingness to use technology for health and to share health information – The reimagining healthcare survey. International Journal of Medical Informatics , 164 , 104803. https://doi.org/10.1016/j.ijmedinf.2022.104803 Levitt, M., & Weldon, S. (2005). A well placed trust?: Public perceptions of the governance of DNA databases. Critical Public Health , 15 (4), 311-321. https://doi.org/10.1080/09581590500523186 Mählmann, L., Schee gen. Halfmann, S., von Wyl, A., & Brand, A. (2018). Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults: A Qualitative Study. Public Health Genomics , 20 (5), 293-306. https://doi.org/10.1159/000486588 Middleton, A., Niemiec, E., Prainsack, B., Bobe, J., Farley, L., Steed, C., Smith, J., Bevan, P., Bonhomme, N., Kleiderman, E., Thorogood, A., Schickhardt, C., Garattini, C., Vears, D., Littler, K., Banner, N., Scott, E., Kovalevskaya, N. V., Levin, E., … Howard, H. C. (2018). ‘Your DNA, Your Say’: Global Survey Gathering Attitudes Toward Genomics: Design, Delivery and Methods. Personalized Medicine , 15 (4), 311-318. https://doi.org/10.2217/pme-2018-0032 Milne, R., Morley, K. I., Almarri, M. A., Anwer, S., Atutornu, J., Baranova, E. E., Bevan, P., Cerezo, M., Cong, Y., Costa, A., Critchley, C., Fernow, J., Goodhand, P., Hasan, Q., Hibino, A., Houeland, G., Howard, H. C., Hussain, S. Z., Malmgren, C. I., … Middleton, A. (2021). Demonstrating trustworthiness when collecting and sharing genomic data: Public views across 22 countries. Genome Medicine , 13 (1), 92. https://doi.org/10.1186/s13073-021-00903-0 Milne, R., Morley, K. I., Howard, H., Niemiec, E., Nicol, D., Critchley, C., Prainsack, B., Vears, D., Smith, J., Steed, C., Bevan, P., Atutornu, J., Farley, L., Goodhand, P., Thorogood, A., Kleiderman, E., Middleton, A., & on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health. (2019). Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. Human Genetics , 138 (11), 1237-1246. https://doi.org/10.1007/s00439-019-02062-0 Naeem, I., Quan, H., Singh, S., Chowdhury, N., Chowdhury, M., Saini, V., & Tc, T. (2022). Factors Associated With Willingness to Share Health Information: Rapid Review. JMIR Human Factors , 9 (1), e20702. https://doi.org/10.2196/20702 Nunes Vilaza, G., Coyle, D., & Bardram, J. E. (2021). Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey. Journal of Medical Internet Research , 23 (10), e31294. https://doi.org/10.2196/31294 Pronicki, Ł., Czech, M., Gujski, M., & Boguszewska, N. D. (2023). Awareness, Attitudes and Willingness to Donate Biological Samples to a Biobank: A Survey of a Representative Sample of Polish Citizens. Healthcare , 11 (20), 2714. https://doi.org/10.3390/healthcare11202714 Rapini, M. S., Chiarini, T., Bittencourt, P., & Caliari, T. (2019). The intensity of private funding and the results of university? Firm interactions: the case of Brazil. INMR - Innovation & Management Review , 16 (2), 161-184. https://doi.org/10.1108/INMR-11-2018-0088 Reis, F. P. D., & Pêgo-Fernandes, P. M. (2022). Biobank – the key to personalized medicine. Sao Paulo Medical Journal , 140 (5), 625-626. https://doi.org/10.1590/1516-3180.2022.1405.12072022 Rivera-Alcántara, J. A., Esparza-Hurtado, N., Galán-Ramírez, G. A., Cruz-Bautista, I., Mehta, R., Aguilar-Salinas, C. A., & Martagon, A. J. (2024). A systematic review of biobanks in Latin America: Strengths and limitations for biomedical research. The International Journal of Biological Markers , 39 (2), 91-106. https://doi.org/10.1177/03936155241239672 Romano, V., Milne, R., & Mascalzoni, D. (2021). Italian public’s views on sharing genetic information and medical information: Findings from the ‘Your DNA, Your Say’ study. Wellcome Open Research , 6 , 180. https://doi.org/10.12688/wellcomeopenres.16909.1 Saeki, S. (2022). Impact of the “Amendments to the Act of the Protection of Personal Information” to Global Health Research Conducted in Japanese Medical Facilities. Journal of Epidemiology , 32 (9), 438-438. https://doi.org/10.2188/jea.JE20220141 Sanderson, S. C., Brothers, K. B., Mercaldo, N. D., Clayton, E. W., Antommaria, A. H. M., Aufox, S. A., Brilliant, M. H., Campos, D., Carrell, D. S., Connolly, J., Conway, P., Fullerton, S. M., Garrison, N. A., Horowitz, C. R., Jarvik, G. P., Kaufman, D., Kitchner, T. E., Li, R., Ludman, E. J., … Holm, I. A. (2017). Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US. The American Journal of Human Genetics , 100 (3), 414-427. https://doi.org/10.1016/j.ajhg.2017.01.021 Sanz de Acedo Lizárraga, M. L., Sanz de Acedo Baquedano, M. T., & María Cardelle-Elawar. (2007). Factors that affect decision making: Gender and age differences. International Journal of Psychology and Psychological Therapy , 7 (3), 381-391. Sohail, M., Palma-Martínez, M. J., Chong, A. Y., Quinto-Cortés, C. D., Barberena-Jonas, C., Medina-Muñoz, S. G., Ragsdale, A., Delgado-Sánchez, G., Cruz-Hervert, L. P., Ferreyra-Reyes, L., Ferreira-Guerrero, E., Mongua-Rodríguez, N., Canizales-Quintero, S., Jimenez-Kaufmann, A., Moreno-Macías, H., Aguilar-Salinas, C. A., Auckland, K., Cortés, A., Acuña-Alonzo, V., … Moreno-Estrada, A. (2023). Mexican Biobank advances population and medical genomics of diverse ancestries. Nature , 622 (7984), 775-783. https://doi.org/10.1038/s41586-023-06560-0 Spooner, K. K., Salemi, J. L., Salihu, H. M., & Zoorob, R. J. (2017). eHealth patient-provider communication in the United States: Interest, inequalities, and predictors. Journal of the American Medical Informatics Association: JAMIA , 24 (e1), e18-e27. https://doi.org/10.1093/jamia/ocw087 Teufel, M., & Sobetzko, P. (2022). Reducing costs for DNA and RNA sequencing by sample pooling using a metagenomic approach. BMC Genomics , 23 (1), 613. https://doi.org/10.1186/s12864-022-08831-y Tosoni, S., Voruganti, I., Lajkosz, K., Habal, F., Murphy, P., Wong, R. K. S., Willison, D., Virtanen, C., Heesters, A., & Liu, F.-F. (2021). The use of personal health information outside the circle of care: Consent preferences of patients from an academic health care institution. BMC Medical Ethics , 22 (1), 29. https://doi.org/10.1186/s12910-021-00598-3 Trinidad, S. B., Fullerton, S. M., Bares, J. M., Jarvik, G. P., Larson, E. B., & Burke, W. (2010). Genomic research and wide data sharing: Views of prospective participants. Genetics in Medicine: Official Journal of the American College of Medical Genetics , 12 (8), 486-495. https://doi.org/10.1097/GIM.0b013e3181e38f9e Valdés, E., & Lecaros, J. A. (2024). Biobanks and data interoperability in Latin America: Engendering high-quality evidence for the global research ecosystem. Frontiers in Medicine , 11 . https://doi.org/10.3389/fmed.2024.1481891 Vidgen, M. E., Kaladharan, S., Malacova, E., Hurst, C., & Waddell, N. (2020). Sharing genomic data from clinical testing with researchers: Public survey of expectations of clinical genomic data management in Queensland, Australia. BMC Medical Ethics , 21 (1), 119. https://doi.org/10.1186/s12910-020-00563-6 Voigt, T. H., Holtz, V., Niemiec, E., Howard, H. C., Middleton, A., & Prainsack, B. (2020). Willingness to donate genomic and other medical data: Results from Germany. European Journal of Human Genetics , 28 (8), 1000-1009. https://doi.org/10.1038/s41431-020-0611-2 Additional Declarations No competing interests reported. Supplementary Files SupplementaryFiguresFig.1SociodemographicfactorsrelatedtotheMeansofKnowmeindex.jpeg Fig. 1 Sociodemographic factors related to the “Means of Know me” index. SupplementaryFiguresFig.2SociodemographicfactorsrelatedtotheMeansofAgainstmeindex.jpeg Fig. 2Sociodemographic factors related to the “Means of Against me” index. SupplementaryFiguresFig.3WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromArgentina.jpeg Fig. 3Willingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Argentina SupplementaryFiguresFig.4WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromBrazil.jpeg Fig. 4Willingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Brazil SupplementaryFiguresFig.5WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromCostaRica.jpeg Fig. 5Willingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Costa Rica SupplementaryFiguresFig.6WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromMexico.jpeg Fig. 6Willingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Mexico Cite Share Download PDF Status: Under Review Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Mexico\u003c/p\u003e","description":"","filename":"FIG2WI1.png","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/7c9b72b456512ab8c149b929.png"},{"id":97893839,"identity":"5e450396-8bda-4424-b8b4-102d2787e5eb","added_by":"auto","created_at":"2025-12-10 15:31:21","extension":"jpeg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":35926,"visible":true,"origin":"","legend":"\u003cp\u003eCountry comparisons of \u003cem\u003e“Know me”\u003c/em\u003e and \u003cem\u003e“Against me”\u003c/em\u003e Concern Indexes scores from the “Your DNA, Your Say” Global Survey\u003c/p\u003e","description":"","filename":"Fig.3CountrycomparisonsofKnowmeandAgainstmeConcernIndexesscoresfromtheYourDNAYourSayGlobalSurvey.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/5c3aa2ead4a2c47895598289.jpeg"},{"id":97892760,"identity":"5cadd27d-5713-4f8a-bf67-f5b241037897","added_by":"auto","created_at":"2025-12-10 15:20:23","extension":"jpeg","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":66722,"visible":true,"origin":"","legend":"\u003cp\u003eSociodemographic factors related to the “Willingness to donate” index. The asterisk indicates p\u0026lt;0.05\u003c/p\u003e","description":"","filename":"Fig.4SociodemographicfactorsrelatedtotheWillingnesstodonateindex.Theasteriskindicatesp0.05.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/09aec3bc83312591c3e469db.jpeg"},{"id":97893132,"identity":"94ef347c-b404-42ea-a297-d218ac5c8953","added_by":"auto","created_at":"2025-12-10 15:27:46","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1423838,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/93b41910-eb19-4893-a0be-d61dbeea83ee.pdf"},{"id":97893541,"identity":"e9a435d7-55d6-43ee-92b7-b393d9ccf5e6","added_by":"auto","created_at":"2025-12-10 15:30:41","extension":"jpeg","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":48261,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eFig. 1\u003c/strong\u003e Sociodemographic factors related to the “Means of Know me” index.\u003c/p\u003e","description":"","filename":"SupplementaryFiguresFig.1SociodemographicfactorsrelatedtotheMeansofKnowmeindex.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/848c5858d4d5ef4c6de664ff.jpeg"},{"id":97694763,"identity":"9c8999b2-3d0a-4ae8-a4b2-9ff124f7d099","added_by":"auto","created_at":"2025-12-08 11:26:10","extension":"jpeg","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":46808,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eFig. 2\u003c/strong\u003eSociodemographic factors related to the “Means of Against me” index.\u003c/p\u003e","description":"","filename":"SupplementaryFiguresFig.2SociodemographicfactorsrelatedtotheMeansofAgainstmeindex.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/376aaf033e2603f5c5260ab0.jpeg"},{"id":97892620,"identity":"d333ae43-4200-434c-a2a3-e408d01062aa","added_by":"auto","created_at":"2025-12-10 15:16:02","extension":"jpeg","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":104637,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eFig. 3\u003c/strong\u003eWillingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Argentina\u003c/p\u003e","description":"","filename":"SupplementaryFiguresFig.3WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromArgentina.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/cf5190ec0aecc113ec52cae2.jpeg"},{"id":97892802,"identity":"f12b9659-6b62-4088-90e4-a2e826225bb8","added_by":"auto","created_at":"2025-12-10 15:22:12","extension":"jpeg","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":115256,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eFig. 4\u003c/strong\u003eWillingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Brazil\u003c/p\u003e","description":"","filename":"SupplementaryFiguresFig.4WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromBrazil.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/b46b651cf4c925462a8a6313.jpeg"},{"id":97894283,"identity":"fb06b9cf-44ba-4c0b-87b8-796de8342aba","added_by":"auto","created_at":"2025-12-10 15:32:13","extension":"jpeg","order_by":5,"title":"","display":"","copyAsset":false,"role":"supplement","size":109264,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eFig. 5\u003c/strong\u003eWillingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Costa Rica\u003c/p\u003e","description":"","filename":"SupplementaryFiguresFig.5WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromCostaRica.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/ae8554ade0a605c360cde827.jpeg"},{"id":97694788,"identity":"7d15e806-725d-41a2-beb7-295652c421e8","added_by":"auto","created_at":"2025-12-08 11:26:10","extension":"jpeg","order_by":6,"title":"","display":"","copyAsset":false,"role":"supplement","size":104628,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eFig. 6\u003c/strong\u003eWillingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Mexico\u003c/p\u003e","description":"","filename":"SupplementaryFiguresFig.6WillingnesstodonateanonymizedgeneticandormedicaldatatodifferenttypesofresearchersacrosssamplesfromMexico.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8226828/v1/25c1b9be1e4b26d42e9a6229.jpeg"}],"financialInterests":"No competing interests reported.","formattedTitle":"Your DNA, your concerns: Public attitudes toward donation of genomic data for research in four Latin American countries","fulltext":[{"header":"Introduction","content":"\u003cp\u003e\u003c/p\u003e\u003cp\u003eA growing volume of genomic data is being generated in the field of human health, facilitated by the reduction in costs associated with various sequencing techniques, including both whole genome sequencing (WGS) and whole exome sequencing (WES). Future cost reductions are anticipated with the development of improved sequencing devices that offer greater read density and read length per chip (Teufel \u0026amp; Sobetzko, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). The increasing relevance of access to such massive sequencing data lies in its potential use across various contexts, addressing numerous questions in both biological and public health fields, and thus providing a rich resource for subsequent scientific analysis and future clinical applications.\u003c/p\u003e\u003cp\u003eLarge-scale genomic and medical data generated by research groups can be utilized in specific contexts such as public health and scientific research. It is estimated that by 2020, global health data reached 2,314 exabytes (10^18 bytes), and genomic data is projected to reach 25 petabytes (10^15 bytes) by 2030. The use of big data holds the potential for greater \"precision\" in public health. Increased individual-level data can contribute to improved population health by allowing the integration of various social and environmental risk factors through large-scale data analysis (Khoury et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2020\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn order to use this valuable resource, medical and genomic data is commonly stored in repositories and/or biobanks. This facilitates the handling of carefully curated information and annotated biological samples for various applications by researchers from multiple scientific fields, thereby maximizing its utility and relevance. As more well-characterized, high-quality samples and associated data from diverse populations become available through biobanks and repositories, research will progress more rapidly and have a more significant impact on contemporary medical care (Brancato et al., \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Gallagher et al., \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e2025\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eGiven the sensitive nature of medical-genetic data, the use of such information requires that individual informed consent has been obtained. Because access to such data should also consider social perceptions and opinions regarding donation of personal medical and genomic data across cultures, the Participant Values Task Team of the Regulatory and Ethics Group at GA4GH, developed the \"Your DNA, Your Say\" survey (Middleton et al., \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). This online anonymous survey was designed to explore, through various questions, the opinions and perceptions of the general public regarding the access, sharing, and donation of their genetic and medical data to others such as doctors, non-profit researchers, and for-profit researchers; perceived harms and fears; expectations regarding the treatment of shared data; and factors influencing trustworthiness. Respondents were presented with a list of hypothetical scenarios, potential problems, or concerns that could arise if their genetic information were linked to their personal data.\u003c/p\u003e\u003cp\u003eResults from the application of this and other surveys have shown that decisions and perceptions are influenced by several sociodemographic factors such as age, gender, educational level, religiosity, marital status, whether the person has children, and country of origin, among others (Adu et al., \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Baines et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Brall et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Chavarria-Soley et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Goodman et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; King et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2012\u003c/span\u003e; Lee et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; M\u0026auml;hlmann et al., \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Milne et al., 2019; Sanderson et al., \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Sanz de Acedo Liz\u0026aacute;rraga et al., 2007; Tosoni et al., \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Vidgen et al., \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Voigt et al., \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e2020\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn this paper, we present the results of the survey in four Latin American countries (Argentina, Brazil, Costa Rica, and Mexico). For this, we created three indexes (one for willingness to donate and two for concerns regarding donation) based on questions from the survey, which we believe can help in the understanding of factors associated with attitudes regarding donation of genetic/medical information. To the best of our knowledge, this is the first study to analyze perspectives and concerns on genetic data sharing of individuals from Latin American countries, and in relation to other regions of the world. We believe these findings contribute to a better understanding of what drives people to share genetic and medical data and can support the development of data-sharing policies for international biomedical research that respect sociodemographic, cultural and historical differences.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eThe Instrument\u003c/h2\u003e\u003cp\u003eThe present study is based on the analysis of the responses from Argentina, Brazil, Costa Rica, and Mexico to the cross-sectional anonymous survey \"Your DNA, Your Say\". The complete survey can be accessed at \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ewww.YourDNAYourSay.org\u003c/span\u003e\u003cspan address=\"http://www.YourDNAYourSay.org\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e, where it is available in 18 languages. Detailed information regarding specific aspects of the survey can be found as extended data at the official project website \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ewww.YourDNAYourSay.org\u003c/span\u003e\u003cspan address=\"http://www.YourDNAYourSay.org\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e (Middleton et al., \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e2018\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe main aim of the survey is to explore, through various questions, the opinions and perceptions of the general public regarding the access, sharing, and donation of their genetic and medical data to third parties. Through 29 questions, the participants are asked about general socio demographic information, their internet footprint, familiarity with terms such as genetics and genomics, opinions on who should have access to genetic and medical data, perceived risks and concerns, expectations for how shared data should be handled, and the factors that influence their trust in data sharing and security. Completing the survey takes approximately 15 to 20 minutes.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eRecruitment of Participants\u003c/h3\u003e\n\u003cp\u003eRecruitment of participants followed national and international bioethical regulations for anonymous surveys. Participants from Argentina (N\u0026thinsp;=\u0026thinsp;919), Brazil (N\u0026thinsp;=\u0026thinsp;1349), and Mexico (N\u0026thinsp;=\u0026thinsp;1347) were recruited via the market research company Dynata (formerly ResearchNow). In Costa Rica, 469 individuals were surveyed using a mixed strategy, including social media posts, WhatsApp messages through a local marketing company, phone calls using the national database of cell phone numbers, and personal interviews.\u003c/p\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003eStatistical Analysis\u003c/h2\u003e\u003cp\u003eFor this analysis, we included the following sociodemographic factors: individuals' age recorded in 10-year intervals starting from age 21 (and a separate category for individuals 18\u0026ndash;20 years of age); whether they have children; their relationship status (\u0026lsquo;Divorced\u0026rsquo;, \u0026lsquo;Separated\u0026rsquo;, \u0026lsquo;Single\u0026rsquo;, \u0026lsquo;Widowed\u0026rsquo;, \u0026lsquo;Married/Civil partnership/Living together\u0026rsquo;); the highest level of education attained (\u0026lsquo;Tertiary\u0026rsquo;, \u0026lsquo;Secondary\u0026rsquo;, \u0026lsquo;Primary\u0026rsquo;, or \u0026lsquo;Other\u0026rsquo;); and self reported religiosity (\u0026lsquo;A religious person\u0026rsquo; or \u0026lsquo;Not a religious person\u0026rsquo;).\u003c/p\u003e\u003cp\u003eAlso included in the analysis was whether the participants would donate their \u0026lsquo;anonymous\u0026rsquo; DNA and medical information for research purposes (with a glossary definition clarifying that complete anonymity is not achievable) to three categories of recipients: (a) to medical doctors, (b) to nonprofit researchers, and (c) to for-profit researchers. In each case, the possible responses regarding data donation preference were (a) \u0026ldquo;No\u0026rdquo;, (b) \u0026ldquo;I\u0026rsquo;m not sure\u0026rdquo;, or (c) \u0026ldquo;Yes\u0026rdquo;. Responses from participants were used to create an index named \u003cb\u003e\u0026ldquo;Willingness to donate\u0026rdquo;\u003c/b\u003e. For each category of recipient of genetic data (medical doctor, non-profit researcher, for-profit researcher), the \u0026ldquo;Unwilling to donate\u0026rdquo;, \u0026ldquo;Not sure\u0026rdquo;, and \u0026ldquo;Willing to donate\u0026rdquo; responses were respectively assigned a score of 0, 1, or 2. A person\u0026rsquo;s scores for each category were added and the variable was then standardized to a 0-100 scale, where higher values indicate a greater willingness to donate genetic information.\u003c/p\u003e\u003cp\u003eWe also analyzed the section in which participants were presented with a list of hypothetical scenarios, potential problems, or concerns that could arise if their genetic information were linked to their personal data. The list of hypothetical concerns was generated from pilot work, academic literature, and the experience of the Global Alliance for Genomics and Health experts who designed the survey (Middleton et al. \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). For each item on the list, participants had to select one of four possible answers: \u0026ldquo;Not bothered\u0026rdquo;, \u0026ldquo;I\u0026rsquo;m not sure\u0026rdquo;, \u0026ldquo;Concerned\u0026rdquo;, or \u0026ldquo;Very concerned\u0026rdquo;. We used factor analysis to find correlated items and then created two \u003cb\u003e\u0026ldquo;\u003c/b\u003e\u003cb\u003eConcern Indexes\u003c/b\u003e\u003cb\u003e\u0026rdquo;\u003c/b\u003e intended to capture different features of this concern.\u003c/p\u003e\u003cp\u003eThe first one, called \u0026ldquo;\u003cb\u003eKnow me\u003c/b\u003e\u0026rdquo;, refers to the fear of losing anonymity of personal data. Five potential concerns from the possible scenarios were included: 1. My friends potentially knowing something about me that I hadn\u0026rsquo;t chosen to tell them; 2. My family potentially knowing something about me that I hadn\u0026rsquo;t chosen to tell them; 3. My government potentially knowing something about me that I hadn\u0026rsquo;t chosen to tell them; 4. Police potentially knowing something about me that I hadn\u0026rsquo;t chosen to tell them; 5. Marketing companies targeting me to sell me products. The original scale (0 \u0026ldquo;Not bothered\u0026rdquo;, 1 \u0026ldquo;I am just not sure\u0026rdquo;, 2 \u0026ldquo;Concerned\u0026rdquo;, 3 \u0026ldquo;Very concerned\u0026rdquo;) was normalized and standardized to a 0-100 metric, with higher values reflecting higher levels of concern. The average value of the \u003cem\u003eKnow me Index\u003c/em\u003e is 47 points. The Cronbach\u0026rsquo;s Alpha value for all 5 items is 0.76.\u003c/p\u003e\u003cp\u003eThe second Index was named \u0026ldquo;\u003cb\u003eAgainst me\u003c/b\u003e\u0026rdquo;. In this case, the index corresponds to concerns related to direct consequences (discrimination, incrimination in crimes, etc) for participants. Seven potential concerns were included in the index: 1. Being stigmatised and labelled in some way online; 2. Being cloned; 3. My DNA being copied and then planted at the scene of a crime; 4. Health or life insurance companies using the information to discriminate against me; 5. Employers using the information to discriminate against me; 6. Upsetting my genetic relatives (because my DNA information is similar to their DNA information); 7. Ethnic identification and racial discrimination. Like in the previous case, the original scale (0 \u0026ldquo;Not bothered\u0026rdquo;, 1 \u0026ldquo;I am just not sure\u0026rdquo;, 2 \u0026ldquo;Concerned\u0026rdquo;, 3 \u0026ldquo;Very concerned\u0026rdquo;) was normalized and standardized to a 0-100 metric. The average value of the \u003cem\u003eAgainst me Index\u003c/em\u003e is 68 points. Cronbach\u0026rsquo;s Alpha value of all 7 items is 0.84.\u003c/p\u003e\u003cp\u003eTwo sets of statistical models (four in total) were used to analyze the correlates related to individuals\u0026rsquo; concerns regarding the donation of genetic data. Using the \u003cem\u003e\u0026ldquo;Willingness to donate\u0026rdquo;\u003c/em\u003e index as an independent variable together with a set of sociodemographic items like age, gender, country, education level, having children, marital status, and religiosity, we ran two regression models to study the relationship between these variables and the levels of concern regarding potential loss of anonymity (indexes \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e). Additionally, the analysis was repeated with the \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e concern indexes and sociodemographic factors as independent variables, and \u003cem\u003e\u0026ldquo;Willingness to donate\u0026rdquo;\u003c/em\u003e as the dependent variable. In this case the purpose was to understand how individuals\u0026rsquo; concerns and sociodemographic factors impact the disposition to share genetic data.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e\u003c/p\u003e\u003cp\u003eIn the present study, we have analyzed responses to the Your DNA, Your say survey from four Latin American countries: Argentina (N\u0026thinsp;=\u0026thinsp;919), Brazil (N\u0026thinsp;=\u0026thinsp;1349), Costa Rica (N\u0026thinsp;=\u0026thinsp;476), and Mexico (N\u0026thinsp;=\u0026thinsp;1347). A summary of the sociodemographic characteristics of the sample for each country is presented in Table\u0026nbsp;1.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eTable 1\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSociodemographic characteristics of respondents of the \u0026ldquo;Your DNA Your Say\u0026rdquo; Survey from Argentina, Brazil, Costa Rica, and Mexico\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"692\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 156px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCountry\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eArgentina\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 138px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBrazil\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 128px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCosta Rica\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 148px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMexico\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariable\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCategories\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(n=919)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 138px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(n=1349)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 128px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(n=469)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 148px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(n=1347)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003eN\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003eN\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003eN\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003eN\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e30 and under\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e233\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e25.35\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e412\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e30.54\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e177\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e37.74\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e409\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e30.36\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e31-40\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e192\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e20.89\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e301\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e22.31\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e112\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e23.88\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e337\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e25.02\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e41-50\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e159\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e17.30\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e268\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e19.87\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e80\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e17.06\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e293\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e21.75\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e51-60\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e197\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e21.44\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e237\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e17.57\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e58\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e12.37\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e181\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e13.44\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eOver 60\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e138\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e15.02\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e131\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e9.71\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e42\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e8.96\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e127\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e9.43\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMissing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFemale\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e485\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e52.77\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e723\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e53.6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e282\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e60.13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e694\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e51.52\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMale\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e434\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e47.33\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e626\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e46.4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e175\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e37.31\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e653\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e48.48\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMissing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e2.56\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eChildren\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNo\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e282\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e30.69\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e458\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e33.95\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e225\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e47.97\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e503\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e37.34\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eYes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e620\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e67.46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e872\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e64.64\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e231\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e49.25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e828\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e61.47\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMissing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e1.85\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e1.41\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e2.77\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e1.19\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEducation\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTertiary\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e589\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e64.09\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e874\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e64.79\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e274\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e58.42\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e1159\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e86.04\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSecondary\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e280\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e30.47\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e366\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e27.13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e135\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e28.78\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e103\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e7.65\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrimary\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e1.96\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e53\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e3.93\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e48\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e10.23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0.30\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eOther\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e3.48\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e56\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e4.15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e2.56\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e80\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e5.94\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMissing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0.07\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eReligiosity\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNot a religious person\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e402\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e43.74\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e336\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e24.91\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e199\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e42.43\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e504\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e37.42\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eA religious person\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e516\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e56.15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e1013\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e75.09\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e270\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e57.57\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e843\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e62.58\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMissing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0.11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelationship\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMarried / Civil partnership / Living together\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e562\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e61.15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e827\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e61.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e201\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e42.86\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e832\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e61.77\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDivorce / Single / Separated / Widowed\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e356\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e38.74\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e522\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e38.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e268\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e57.14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e515\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e38.23\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 80px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMissing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 53px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0.11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 59px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 79px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\u003cp\u003eParticipants were asked about their willingness to donate their anonymized genetic data and medical information to a database accessible to different research groups. These groups included the following three categories: medical doctors, non-profit researchers, and for-profit researchers. As can be seen in Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e1\u003c/span\u003e (Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e1\u003c/span\u003e), some participants are willing to donate their genetic data to all potential recipients, while others are consistently unwilling to donate. Alternatively, for an important proportion of participants, willingness to donate information is higher when recipients are medical doctors or non-profit researchers, and drops when potential recipients of their genetic and medical information are for-profit researchers. The response flow shows that most participants who answered \"Yes\" to donating their data to medical researchers tend to also be willing to donate to non-profit researchers. However, there is a noticeable shift toward \"I'm just not sure\" and \"No\" in the case of for-profit researchers, indicating a change in opinion toward indecision or rejection.\u003c/p\u003e\u003cp\u003eNext, we restricted our analysis to only participants who are willing to donate their personal genetic/medical information for research, and are sure of their opinion. The two most frequent categories of responses in these individuals are: a) would donate to medical doctors and non-profit researchers but not to for-profit researchers, and b) would donate to the three potential recipients of the data. We observed significant variation in distribution of the four Latin American countries between those two types of response (X2\u0026thinsp;=\u0026thinsp;10.7, d.f.=3, p\u0026thinsp;=\u0026thinsp;0.01; Fig.\u0026nbsp;\u003cspan refid=\"Fig4\" class=\"InternalRef\"\u003e2\u003c/span\u003e). The proportion of individuals who chose to donate only for non-profit use is highest in Costa Rica and lowest in Brazil, with Mexico and Argentina presenting intermediate values.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eOne of the sections of the survey explores the participants\u0026rsquo; concerns regarding donation of their genetic/medical data in case anonymity would be lost. For each of 12 potential concerns, respondents chose which ones concerned them. As described in the methods section, we used this information to create two \u0026ldquo;Concern Indexes\u0026rdquo; for our study: the \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e index, and the \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e index. The \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e index groups concerns related to other people knowing something about participants that they do not wish to share. Meanwhile, the \u003cem\u003e\"Against me\u0026rdquo;\u003c/em\u003e index groups concerns related to direct consequences (discrimination, incrimination in crimes, etc) for participants. We used a regression analysis to study the effect of sociodemographic factors, as well as the \u003cem\u003e\u0026ldquo;Willingness to donate\u0026rdquo;\u003c/em\u003e variable on scores for both \u003cem\u003eConcern Indexes.\u003c/em\u003e Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e2\u003c/span\u003e summarizes these results.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003e\u003cem\u003eResults for regression analysis exploring the effect of factors influencing levels of concern in respondents from Argentina, Brazil, Costa Rica and Mexico in the case of loss of anonymity of their personal data\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDependent variable: \u0026ldquo;Know Me\u0026rdquo; Index\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eDependent variable: \u0026ldquo;Against Me\u0026rdquo; Index\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAge\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e-0.620\u003c/p\u003e\u003cp\u003e(0.34)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e-1.031**\u003c/p\u003e\u003cp\u003e(0.32)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e-1.922*\u003c/p\u003e\u003cp\u003e(0.90)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.567\u003c/p\u003e\u003cp\u003e(0.84)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eChildren\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1.587\u003c/p\u003e\u003cp\u003e(0.98)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2.954**\u003c/p\u003e\u003cp\u003e(0.92)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eCountry\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1.177*\u003c/p\u003e\u003cp\u003e(0.48)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.945*\u003c/p\u003e\u003cp\u003e(0.45)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eReligion\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e-1.595\u003c/p\u003e\u003cp\u003e(0.95)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3.017***\u003c/p\u003e\u003cp\u003e(0.89)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEducation\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2.904***\u003c/p\u003e\u003cp\u003e(0.41)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.591***\u003c/p\u003e\u003cp\u003e(0.38)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eMarital Status\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e-0.155\u003c/p\u003e\u003cp\u003e(0.51)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.169\u003c/p\u003e\u003cp\u003e(0.47)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eWillingness to donate\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e-2.296***\u003c/p\u003e\u003cp\u003e(0.24)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e-1.319***\u003c/p\u003e\u003cp\u003e(0.22)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eConstant\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e45.982***\u003c/p\u003e\u003cp\u003e(3.48)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e59.257***\u003c/p\u003e\u003cp\u003e(3.26)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eR-sqr\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0.037\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.020\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eDfres\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3929\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3929\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eBIC\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e37554.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e37038.9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003ctfoot\u003e\u003ctr\u003e\u003ctd colspan=\"3\"\u003eNote. The asterisk indicates: * p\u0026thinsp;\u0026lt;\u0026thinsp;0.05, ** p\u0026thinsp;\u0026lt;\u0026thinsp;0.01, *** p\u0026thinsp;\u0026lt;\u0026thinsp;0.001\u003c/td\u003e\u003c/tr\u003e\u003c/tfoot\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eFor the \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e index, levels of concern are lower in women compared to men, and in people with high willingness to donate their information. Higher levels of concern are seen in Mexico than in the other countries, as well as in individuals with higher education levels. In the case of the \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e index, levels of concern are lower in older individuals, and in people with high willingness to donate their information. Meanwhile, factors related to higher concerns are having children, being religious, and as in the previous index (\u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e), coming from Mexico, and having a higher education level.\u003c/p\u003e\u003cp\u003eGiven that responses from all participating countries in the \u0026ldquo;Your DNA, Your Say\u0026rdquo; survey are available, we decided to explore each country\u0026rsquo;s mean scores for the \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e indexes. As can be seen in Fig.\u0026nbsp;\u003cspan refid=\"Fig6\" class=\"InternalRef\"\u003e3\u003c/span\u003e (Fig.\u0026nbsp;\u003cspan refid=\"Fig6\" class=\"InternalRef\"\u003e3\u003c/span\u003e), Japan and Germany stand out as the countries with the highest scores for concern for both indexes. On the opposite side of the spectrum, Sweden shows particularly low levels of concern. Among Latin American countries, Argentina, Brazil and Costa Rica are grouped close together in their level of concern, which is on the lower end of the distribution. Meanwhile, Mexican individuals are more concerned both with other people knowing information about them, and potential negative consequences.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eWe then used regression analysis to explore factors influencing willingness to donate genetic or medical information. For this, we used the \u003cem\u003e\u0026ldquo;Willingness to donate\u0026rdquo;\u003c/em\u003e variable we created as the dependent variable. We used two models which both include the same list of sociodemographic variables and differ in the \u003cem\u003e\u0026ldquo;Concern Index\u0026rdquo;\u003c/em\u003e included (\u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e in model 3, \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e in model 4). Age, having children, education level and \u003cem\u003eConcern Index\u003c/em\u003e scores are all significantly associated with willingness to donate genetic or medical information. Our results are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e3\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003e\u003cem\u003eResults for regression analysis exploring the effect of factors influencing willingness to donate medical or genetic data for research in respondents from the survey from Argentina, Brazil, Costa Rica, and Mexico\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eM3: Dependent variable:\u003c/p\u003e\u003cp\u003eIndex of willingness to donate genetic information\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM4: Dependent variable:\u003c/p\u003e\u003cp\u003eIndex of willingness to donate genetic information\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAge\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e-3.284***\u003c/p\u003e\u003cp\u003e(0.38)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e-3.343***\u003c/p\u003e\u003cp\u003e(0.38)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0.849\u003c/p\u003e\u003cp\u003e(1.01)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.376\u003c/p\u003e\u003cp\u003e(1.01)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eChildren\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8.524***\u003c/p\u003e\u003cp\u003e(1.09)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e8.713***\u003c/p\u003e\u003cp\u003e(1.09)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eCountry\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0.646\u003c/p\u003e\u003cp\u003e(0.53)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.558\u003c/p\u003e\u003cp\u003e(0.54)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eReligion\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0.211\u003c/p\u003e\u003cp\u003e(1.07)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.837\u003c/p\u003e\u003cp\u003e(1.08)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEducation\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2.944***\u003c/p\u003e\u003cp\u003e(0.45)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2.663***\u003c/p\u003e\u003cp\u003e(0.46)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eMarital Status\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0.194\u003c/p\u003e\u003cp\u003e(0.57)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.243\u003c/p\u003e\u003cp\u003e(0.57)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eKnow Me\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e-0.172***\u003c/p\u003e\u003cp\u003e(0.02)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAgainst\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e-0.114***\u003c/p\u003e\u003cp\u003e(0.02)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eConstant\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e58.933***\u003c/p\u003e\u003cp\u003e(3.86)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e58.561***\u003c/p\u003e\u003cp\u003e(3.97)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eR-sqr\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0.055\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.041\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eDfres\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3929\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3929\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eBIC\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e38428.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e38487.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003ctfoot\u003e\u003ctr\u003e\u003ctd colspan=\"3\"\u003eNote. The asterisk indicates: \u003cb\u003e* p\u0026thinsp;\u0026lt;\u0026thinsp;0.05, ** p\u0026thinsp;\u0026lt;\u0026thinsp;0.01, *** p\u0026thinsp;\u0026lt;\u0026thinsp;0.001\u003c/b\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tfoot\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eIn particular, younger individuals, people with children, and people with tertiary education level are more likely to be willing to donate their medical/genetic information for use in research (Fig.\u0026nbsp;\u003cspan refid=\"Fig8\" class=\"InternalRef\"\u003e4\u003c/span\u003e). Conversely, older individuals and participants with higher levels of concern in the \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e indexes are less willing to share their information with others. Country of origin, gender, religiosity and marital status do not significantly influence willingness to donate genetic and medical information.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003e\u003c/p\u003e\u003cp\u003eIn this paper we present results of the \"Your DNA Your Say\" survey for four Latin American countries, Argentina, Brazil, Costa Rica, and Mexico. We had previously reported preliminary results from a study conducted with a pilot sample from Costa Rica (Chavarria-Soley et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2021\u003c/span\u003e); for the present study, we recruited a new larger sample from Costa Rica to compare with the results from the other 3 countries. Additionally, we analyze the results from the 4 countries as a unified entity to compare with other countries of the world. This research expands the analysis to provide a more comprehensive and comparative view of attitudes and concerns toward genetic data and privacy in the Latin American context.\u003c/p\u003e\u003cp\u003eThe Latin American countries included in our sample appear to share a similar viewpoint regarding data donation to third parties. In general, there is a high willingness to share genetic and medical data for research. When considering the overall willingness to share personal genetic and/or medical information we observed similar attitudes towards medical doctors and non-profit researchers (over 60% of participants willing to donate their information to these two categories of recipients), suggesting that these actors are perceived in a comparable manner. In contrast, individuals are less in favor of sharing their personal genetic and/or medical information with for-profit researchers (37% of participants willing to share their information).\u003c/p\u003e\u003cp\u003eThe reduced willingness to donate medical and genetic data in case of for-profit use of the information has been previously reported. Benevento et al. (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2023\u003c/span\u003e) found that patients are generally willing to share their Protected Health Information (PHI) primarily with providers directly involved in their medical care, but commercial use significantly reduces the willingness to share such information (Benevento et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). Furthermore, on a global scale, scientific institutions are generally regarded as more trustworthy than governments or commercial entities (Pronicki et al., \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). Evidence from several countries shows that individuals are more likely to share their genetic and medical information with nonprofit researchers, such as public institutions, hospitals, and universities (Cascini et al., \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Chavarria-Soley et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; M\u0026auml;hlmann et al., \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Milne et al., \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Medical and/or genetic data donation is often seen as an altruistic act, which can explain the unfavorable perception linked to for-profit use of this information (Trinidad et al., \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e2010\u003c/span\u003e; Levitt \u0026amp; Weldon, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2005\u003c/span\u003e; Nunes Vilaza et al., \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e2021\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eCompared to Argentina, Costa Rica and Mexico, Brazil presents a slightly higher proportion of individuals willing to donate their data regardless of whether the recipient entity operates for profit or not. The lower aversion to profit reflected in the responses of participants of Brazil may in part be due to the particular interaction between universities and private companies in Brazil. The Brazilian government has made efforts to create state research agencies and foster technological innovation programs between companies and universities and research institutes, in which projects are funded with both public and private funds. Furthermore, the existence of the Innovation Law in Brazil has fostered public-private partnerships that protect both intellectual property and technology transfer between these two sectors. (Rapini et al., \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e2019\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWe created the \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e indexes, as well as the \u0026ldquo;\u003cem\u003eWillingness to donate\u0026rdquo;\u003c/em\u003e variable in order to understand how different factors influence people\u0026rsquo;s perception of genetic data donation, which could be useful for studies in other countries. As expected, there is a link between level of concern and willingness to donate. A greater willingness to donate genetic information is associated with lower scores in the \u003cem\u003e\u0026ldquo;Know me\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;Against me\u0026rdquo;\u003c/em\u003e Concern Indexes. This suggests that individuals who worry less about what other people know about them and perceive less risk associated with the potential uses of that information tend to be more willing to share their genetic information.\u003c/p\u003e\u003cp\u003eWhen exploring the factors that influence levels of concern and willingness to donate data, we find that higher levels of education are associated both with more concern (for both indexes) regarding the potential impact of loss of anonymity, and with more willingness to donate personal medical or genetic information. This seemingly contradictory result might suggest that individuals with higher educational levels have greater knowledge of the risks and benefits of sharing genetic information, but often decide that the benefits outweigh the potential risks. A correlation between high level of education and willingness to donate medical and genetic data has been previously reported in results of the Your DNA Your Say survey for Germany, United Kingdom, United States of America, Canada and Australia (Milne et al., 2019; Voigt et al., \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Meanwhile, in other countries like Italy, an education below the tertiary level has been associated with a lower overall willingness to share this data. (Romano et al., \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Higher educational attainment has also been reported to correlate with a positive attitude towards genetic testing (Balck et al., \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2009\u003c/span\u003e), and willingness to donate medical or genetic data (Baines et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Brall et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Broekstra et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Goodman et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Lee et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Milne et al., 2019).\u003c/p\u003e\u003cp\u003eRegarding religiosity, we find that religious individuals are more concerned with the potential direct consequences of sharing genetic information than non-religious persons. In a similar manner, other studies have found lower religiosity to be associated with a greater willingness to share data compared to religious participants\u003c/p\u003e\u003cp\u003e(Baines et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Brall et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Sanderson et al., \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). The relationship between religiosity and an individual's willingness to donate, according to Domaradzki \u0026amp; Walkowiak (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2024\u003c/span\u003e), can serve as a double-edged sword. Religiosity may boost participation by appealing to altruism and the greater good, but it can also hinder it if donors fear research could conflict with their values.\u003c/p\u003e\u003cp\u003eCountry of origin shows a significant but slight effect on levels of concern, indicating that cultural differences between countries may influence attitudes toward genetic information. In particular, Mexican individuals had higher concern scores in both the \u0026ldquo;Know me\u0026rdquo; and \u0026ldquo;Against Me\u0026rdquo; indexes, as is evident in Fig.\u0026nbsp;\u003cspan refid=\"Fig6\" class=\"InternalRef\"\u003e3\u003c/span\u003e (Fig.\u0026nbsp;\u003cspan refid=\"Fig6\" class=\"InternalRef\"\u003e3\u003c/span\u003e). However, we found no association between country of origin and willingness to donate medical and genetic data.\u003c/p\u003e\u003cp\u003eIn our sample, having children is associated both with greater concern about potential direct negative consequences, and also with an increased willingness to donate personal medical and genetic data for research purposes. Having children has been previously linked to a higher willingness to allow release of genomic data to public data banks (Etchegary et al., \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). Even though parental responsibility might lead to greater concern about the risks of sharing information, it has been proposed that the high willingness to donate genetic and medical data among individuals with children can be attributed to a desire to positively impact the quality of life of present and future generations (Baines et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Brall et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Kettis-Lindblad et al., \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2006\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eRegarding the influence of age on perception of genetic data sharing, in our Latin American sample older individuals are less concerned with potential negative consequences directly affecting them in case of loss of anonymity, but -in agreement with previous findings- are in general less willing to donate their genetic information than younger people (Brall et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Goodman et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). There are conflicting reports on the influence of age on willingness to donate personal information, which has been suggested to be due to an incomplete exploration of the interrelated sociodemographic factors which influence the willingness to share health information (Naeem et al., \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). Some studies have reported that older people are more comfortable with sharing health information (Brown et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2016\u003c/span\u003e; M\u0026auml;hlmann et al., \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Vidgen et al., \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), while others found them to be less willing as older users are less comfortable with information technology and, therefore, less likely to share health information (Cocosila \u0026amp; Archer, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2014\u003c/span\u003e). Meanwhile, other studies have found no relationship between age and sharing health information for research purposes or to improve clinical care (Kerath et al., \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e2013\u003c/span\u003e; Spooner et al., \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e2017\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWe took advantage of the availability of the complete YDYS dataset and analyzed the levels of concern captured by the \u0026ldquo;Know Me\u0026rdquo; and \u0026ldquo;Against Me\u0026rdquo; indexes for all participating countries in the YDYS survey. Individuals in Japan and Germany share a high level of concern of both knowledge others may gather about them, and potential consequences against them, in case the anonymity of their data would be lost. Sweden shows particularly low levels of concern for both indexes, while Latin American countries are located between these extremes, with a tendency towards low concern values.\u003c/p\u003e\u003cp\u003eIn Germany, the concept of informational self-determination grants individuals the authority and responsibility to carefully decide how their personal data are used, leading to an attempt to balance the protection of personal rights with benefits for others, possibly resulting in greater caution in data sharing for research purposes (Voigt et al., \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). In Japan, data privacy legislation is very strict; a recent amendment to Japan's Personal Information Protection Law has tightened restrictions on the use of personal/medical data, requiring that information be used only for the specific purposes agreed upon, and thus restricting use of previously collected data (Saeki, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e2022\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn this context, high levels of concern regarding the potential consequences of loss of anonymity of genetic data are expected. Conversely, in Sweden, a study on trust and privacy in healthcare revealed that a large majority (81.9%) of respondents expressed high levels of trust in the healthcare system's ability to protect electronic patient data (Belfrage et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). This trust in data protection could in part explain the low levels of concern for both the \u0026ldquo;Know Me\u0026rdquo; and \u0026ldquo;Against Me\u0026rdquo; indexes in respondents of the YDYS survey .\u003c/p\u003e\u003cp\u003eStudying the attitudes of Latin American populations towards medical and genetic data donation is crucially relevant for research, since perception of potential participants will influence the consent process. Particular initiatives, such as the establishment of biobanks, also depend on the willingness of individuals of the general public to participate. Currently, with the evident need to highlight population diversity, Latin America is experiencing a significant surge in the establishment of biobanks and large scale genomic projects across countries such as Mexico, Brazil, Chile, and Argentina (Canario, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Reis \u0026amp; P\u0026ecirc;go-Fernandes, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Rivera-Alc\u0026aacute;ntara et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Sohail et al., \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Vald\u0026eacute;s \u0026amp; Lecaros, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e2024\u003c/span\u003e). These initiatives are designed to advance research and development in crucial areas, contributing to both scientific inquiry and public health. Knowledge of the factors influencing donation of medical/genomic data in these populations can be helpful in achieving successful and representative recruitment.\u003c/p\u003e\u003cp\u003eIn general, in the Latin American countries included in our study there is a positive attitude towards genetic data donation. Our results suggest that young individuals with university education are particularly likely to be willing to participate in research efforts. Different strategies can be implemented in order to improve participation of individuals from other demographic groups. Additionally, our findings underscore the importance of considering both demographic factors and public attitudes and perceptions when developing policies and strategies related to genetic information. It is reasonable to assume that increasing public awareness about the potential uses of genetic information, as well as its associated risks and benefits, would positively impact individuals' willingness to share their genetic data.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eStatement of Ethics Approval The online survey is anonymous; no personally identifiable data (including no IP addresses) were gathered. Participants are informed that their consent is given when they start answering the questions, and they can stop completing the survey at any stage. The online project is physically based at the Wellcome Genome Campus with all data collected and stored in encrypted files at the Wellcome Sanger Institute in Cambridge. The project passed ethical review by the Human Materials and Data Management Committee of the Wellcome Sanger Institute (Registration number: 16/029) as well as legal review to ensure that it was compliant with ethical and legal standards for participant involvement and data collection and storage.\u003c/p\u003e\u003ch2\u003eCompliance with Ethical Standards\u003c/h2\u003e\u003cp\u003e\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConflict of Interest\u003c/strong\u003e\u003cp\u003eAll the authors declare that they have no conflict of interest.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eEthical approval\u003c/strong\u003e\u003cp\u003e\u003cb\u003eResearch involving human participants and/or animals\u003c/b\u003e\u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e\u003cp\u003e This work was funded in part by Wellcome grant [206194] paid to the Society and Ethics Research Group, Connecting Science, and by the University of Costa Rica.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAll authors contributed to the study conception and design. HR and GC-S initiated the collaboration with the UK team (AM, LR, RM). Data curation was performed by GC-S. Formal analysis was done by GC-S and RA-R. AR-R, GC-S and RA-R participated in visualization. AM was in charge of funding acquisition for the Your DNA, Your Say survey. The first draft of the manuscript was written by AR-R, GC-S, RA-R and HR. AR-R, GC-S, HR, RA-R, and GM-T commented on previous versions of the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eParticipants of the Your DNA Your Say survey.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe data from the \"Your DNA, Your Opinion\" surveys that support the findings of this study are available from the corresponding author upon reasonable request.\u003c/p\u003e"},{"header":"References","content":"\u003cp\u003eAdu, E. K., Mills, A., \u0026amp; Todorova, N. (2021). Factors influencing individuals\u0026rsquo; personal health information privacy concerns. A study in Ghana. \u003cem\u003eInformation Technology for Development\u003c/em\u003e, \u003cem\u003e27\u003c/em\u003e(2), 208-234. https://doi.org/10.1080/02681102.2020.1806018 \u003c/p\u003e\n\u003cp\u003eBaines, R., Stevens, S., Austin, D., Anil, K., Bradwell, H., Cooper, L., Maramba, I. D., Chatterjee, A., \u0026amp; Leigh, S. (2024). Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review. \u003cem\u003eJournal of Medical Internet Research\u003c/em\u003e, \u003cem\u003e26\u003c/em\u003e(1), e50421. https://doi.org/10.2196/50421 \u003c/p\u003e\n\u003cp\u003eBalck, F., Berth, H., \u0026amp; Meyer, W. (2009). Genetic testing and molecular biomarkers. \u003cem\u003eGenetic testing and molecular biomarkers\u003c/em\u003e, \u003cem\u003e6\u003c/em\u003e, 743-750. \u003c/p\u003e\n\u003cp\u003eBelfrage, S., Helgesson, G., \u0026amp; Lyn\u0026oslash;e, N. (2022). Trust and digital privacy in healthcare: A cross-sectional descriptive study of trust and attitudes towards uses of electronic health data among the general public in Sweden. \u003cem\u003eBMC Medical Ethics\u003c/em\u003e, \u003cem\u003e23\u003c/em\u003e(1), 19. https://doi.org/10.1186/s12910-022-00758-z \u003c/p\u003e\n\u003cp\u003eBenevento, M., Mandarelli, G., Carravetta, F., Ferorelli, D., Caterino, C., Nicol\u0026igrave;, S., Massari, A., \u0026amp; Solarino, B. (2023). Measuring the willingness to share personal health information: A systematic review. \u003cem\u003eFrontiers in Public Health\u003c/em\u003e, \u003cem\u003e11\u003c/em\u003e. https://doi.org/10.3389/fpubh.2023.1213615 \u003c/p\u003e\n\u003cp\u003eBrall, C., Berlin, C., Zwahlen, M., Ormond, K. E., Egger, M., \u0026amp; Vayena, E. (2021). Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey. \u003cem\u003ePLOS ONE\u003c/em\u003e, \u003cem\u003e16\u003c/em\u003e(4), e0249141. https://doi.org/10.1371/journal.pone.0249141 \u003c/p\u003e\n\u003cp\u003eBrancato, V., Esposito, G., Coppola, L., Cavaliere, C., Mirabelli, P., Scapicchio, C., Borgheresi, R., Neri, E., Salvatore, M., \u0026amp; Aiello, M. (2024). Standardizing digital biobanks: Integrating imaging, genomic, and clinical data for precision medicine. \u003cem\u003eJournal of Translational Medicine\u003c/em\u003e, \u003cem\u003e22\u003c/em\u003e(1), 136. https://doi.org/10.1186/s12967-024-04891-8 \u003c/p\u003e\n\u003cp\u003eBroekstra, R., Aris-Meijer, J. L., Maeckelberghe, E. L. M., Stolk, R. P., \u0026amp; Otten, S. (2022). Motives for withdrawal of participation in biobanking and participants\u0026rsquo; willingness to allow linkages of their data. \u003cem\u003eEuropean Journal of Human Genetics\u003c/em\u003e, \u003cem\u003e30\u003c/em\u003e(3), 367-377. https://doi.org/10.1038/s41431-021-00997-5 \u003c/p\u003e\n\u003cp\u003eBrown, S. M., Bell, S. K., Roche, S. D., Dente, E., Mueller, A., Kim, T.-E., O\u0026rsquo;Reilly, K., Lee, B. S., Sands, K., \u0026amp; Talmor, D. (2016). Preferences of Current and Potential Patients and Family Members Regarding Implementation of Electronic Communication Portals in Intensive Care Units. \u003cem\u003eAnnals of the American Thoracic Society\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e(3), 391-400. https://doi.org/10.1513/AnnalsATS.201509-638OC \u003c/p\u003e\n\u003cp\u003eCanario, J. A. (2021). Comparative analysis of regulatory framework on biobanking to inform policymakers in Central America and the Dominican Republic. \u003cem\u003eWellcome Open Research\u003c/em\u003e, \u003cem\u003e6\u003c/em\u003e, 95. https://doi.org/10.12688/wellcomeopenres.16547.1 \u003c/p\u003e\n\u003cp\u003eCascini, F., Pantovic, A., Al-Ajlouni, Y. A., Puleo, V., Maio, L. D., \u0026amp; Ricciardi, W. (2024). Health data sharing attitudes towards primary and secondary use of data: A systematic review. \u003cem\u003eeClinicalMedicine\u003c/em\u003e, \u003cem\u003e71\u003c/em\u003e. https://doi.org/10.1016/j.eclinm.2024.102551 \u003c/p\u003e\n\u003cp\u003eChavarria-Soley, G., Francis-Cartin, F., Jimenez-Gonzalez, F., \u0026Aacute;vila-Aguirre, A., Castro-Gomez, M. J., Robarts, L., Middleton, A., \u0026amp; Ravent\u0026oacute;s, H. (2021). Attitudes of Costa Rican Individuals Towards Donation of Personal Genetic Data for Research. \u003cem\u003ePersonalized Medicine\u003c/em\u003e, \u003cem\u003e18\u003c/em\u003e(2), 141-152. https://doi.org/10.2217/pme-2020-0113 \u003c/p\u003e\n\u003cp\u003eCocosila, M., \u0026amp; Archer, N. (2014). Perceptions of chronically ill and healthy consumers about electronic personal health records: A comparative empirical investigation. \u003cem\u003eBMJ Open\u003c/em\u003e, \u003cem\u003e4\u003c/em\u003e(7), e005304. https://doi.org/10.1136/bmjopen-2014-005304 \u003c/p\u003e\n\u003cp\u003eDomaradzki, J., \u0026amp; Walkowiak, D. (2024). When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes. \u003cem\u003eJournal of Religion and Health\u003c/em\u003e, \u003cem\u003e63\u003c/em\u003e(2), 1178-1213. https://doi.org/10.1007/s10943-023-01932-2 \u003c/p\u003e\n\u003cp\u003eEtchegary, H., Darmonkov, G., Simmonds, C., Pullman, D., \u0026amp; Rahman, P. (2023). Public attitudes towards genomic data sharing: Results from a provincial online survey in Canada. \u003cem\u003eBMC Medical Ethics\u003c/em\u003e, \u003cem\u003e24\u003c/em\u003e, 81. https://doi.org/10.1186/s12910-023-00967-0 \u003c/p\u003e\n\u003cp\u003eGallagher, C. S., Ginsburg, G. S., \u0026amp; Musick, A. (2025). Biobanking with genetics shapes precision medicine and global health. \u003cem\u003eNature Reviews Genetics\u003c/em\u003e, \u003cem\u003e26\u003c/em\u003e(3), 191-202. https://doi.org/10.1038/s41576-024-00794-y \u003c/p\u003e\n\u003cp\u003eGoodman, D., Johnson, C. O., Bowen, D., Smith, M., Wenzel, L., \u0026amp; Edwards, K. (2017). De-identified genomic data sharing: The research participant perspective. \u003cem\u003eJournal of Community Genetics\u003c/em\u003e, \u003cem\u003e8\u003c/em\u003e(3), 173-181. https://doi.org/10.1007/s12687-017-0300-1 \u003c/p\u003e\n\u003cp\u003eKerath, S. M., Klein, G., Kern, M., Shapira, I., Witthuhn, J., Norohna, N., Kline, M., Baksh, F., Gregersen, P., \u0026amp; Taioli, E. (2013). Beliefs and attitudes towards participating in genetic research \u0026ndash; a population based cross-sectional study. \u003cem\u003eBMC Public Health\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e, 114. https://doi.org/10.1186/1471-2458-13-114 \u003c/p\u003e\n\u003cp\u003eKettis-Lindblad, \u0026Aring;., Ring, L., Viberth, E., \u0026amp; Hansson, M. G. (2006). Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? \u003cem\u003eEuropean Journal of Public Health\u003c/em\u003e, \u003cem\u003e16\u003c/em\u003e(4), 433-440. https://doi.org/10.1093/eurpub/cki198 \u003c/p\u003e\n\u003cp\u003eKhoury, M. J., Armstrong, G. L., Bunnell, R. E., Cyril, J., \u0026amp; Iademarco, M. F. (2020). The intersection of genomics and big data with public health: Opportunities for precision public health. \u003cem\u003ePLOS Medicine\u003c/em\u003e, \u003cem\u003e17\u003c/em\u003e(10), e1003373. https://doi.org/10.1371/journal.pmed.1003373 \u003c/p\u003e\n\u003cp\u003eKing, T., Brankovic, L., \u0026amp; Gillard, P. (2012). Perspectives of Australian adults about protecting the privacy of their health information in statistical databases. \u003cem\u003eInternational Journal of Medical Informatics\u003c/em\u003e, \u003cem\u003e81\u003c/em\u003e(4), 279-289. https://doi.org/10.1016/j.ijmedinf.2012.01.005 \u003c/p\u003e\n\u003cp\u003eLee, C. M. Y., Thomas, E., Norman, R., Wells, L., Shaw, T., Nesbitt, J., Frean, I., Baxby, L., Bennett, S., \u0026amp; Robinson, S. (2022). Educational attainment and willingness to use technology for health and to share health information \u0026ndash; The reimagining healthcare survey. \u003cem\u003eInternational Journal of Medical Informatics\u003c/em\u003e, \u003cem\u003e164\u003c/em\u003e, 104803. https://doi.org/10.1016/j.ijmedinf.2022.104803 \u003c/p\u003e\n\u003cp\u003eLevitt, M., \u0026amp; Weldon, S. (2005). A well placed trust?: Public perceptions of the governance of DNA databases. \u003cem\u003eCritical Public Health\u003c/em\u003e, \u003cem\u003e15\u003c/em\u003e(4), 311-321. https://doi.org/10.1080/09581590500523186 \u003c/p\u003e\n\u003cp\u003eM\u0026auml;hlmann, L., Schee gen. Halfmann, S., von Wyl, A., \u0026amp; Brand, A. (2018). Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults: A Qualitative Study. \u003cem\u003ePublic Health Genomics\u003c/em\u003e, \u003cem\u003e20\u003c/em\u003e(5), 293-306. https://doi.org/10.1159/000486588 \u003c/p\u003e\n\u003cp\u003eMiddleton, A., Niemiec, E., Prainsack, B., Bobe, J., Farley, L., Steed, C., Smith, J., Bevan, P., Bonhomme, N., Kleiderman, E., Thorogood, A., Schickhardt, C., Garattini, C., Vears, D., Littler, K., Banner, N., Scott, E., Kovalevskaya, N. V., Levin, E., \u0026hellip; Howard, H. C. (2018). \u0026lsquo;Your DNA, Your Say\u0026rsquo;: Global Survey Gathering Attitudes Toward Genomics: Design, Delivery and Methods. \u003cem\u003ePersonalized Medicine\u003c/em\u003e, \u003cem\u003e15\u003c/em\u003e(4), 311-318. https://doi.org/10.2217/pme-2018-0032 \u003c/p\u003e\n\u003cp\u003eMilne, R., Morley, K. I., Almarri, M. A., Anwer, S., Atutornu, J., Baranova, E. E., Bevan, P., Cerezo, M., Cong, Y., Costa, A., Critchley, C., Fernow, J., Goodhand, P., Hasan, Q., Hibino, A., Houeland, G., Howard, H. C., Hussain, S. Z., Malmgren, C. I., \u0026hellip; Middleton, A. (2021). Demonstrating trustworthiness when collecting and sharing genomic data: Public views across 22 countries. \u003cem\u003eGenome Medicine\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e(1), 92. https://doi.org/10.1186/s13073-021-00903-0 \u003c/p\u003e\n\u003cp\u003eMilne, R., Morley, K. I., Howard, H., Niemiec, E., Nicol, D., Critchley, C., Prainsack, B., Vears, D., Smith, J., Steed, C., Bevan, P., Atutornu, J., Farley, L., Goodhand, P., Thorogood, A., Kleiderman, E., Middleton, A., \u0026amp; on behalf of the Participant Values Work Stream of the Global Alliance for Genomics and Health. (2019). Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. \u003cem\u003eHuman Genetics\u003c/em\u003e, \u003cem\u003e138\u003c/em\u003e(11), 1237-1246. https://doi.org/10.1007/s00439-019-02062-0 \u003c/p\u003e\n\u003cp\u003eNaeem, I., Quan, H., Singh, S., Chowdhury, N., Chowdhury, M., Saini, V., \u0026amp; Tc, T. (2022). Factors Associated With Willingness to Share Health Information: Rapid Review. \u003cem\u003eJMIR Human Factors\u003c/em\u003e, \u003cem\u003e9\u003c/em\u003e(1), e20702. https://doi.org/10.2196/20702 \u003c/p\u003e\n\u003cp\u003eNunes Vilaza, G., Coyle, D., \u0026amp; Bardram, J. E. (2021). Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey. \u003cem\u003eJournal of Medical Internet Research\u003c/em\u003e, \u003cem\u003e23\u003c/em\u003e(10), e31294. https://doi.org/10.2196/31294 \u003c/p\u003e\n\u003cp\u003ePronicki, Ł., Czech, M., Gujski, M., \u0026amp; Boguszewska, N. D. (2023). Awareness, Attitudes and Willingness to Donate Biological Samples to a Biobank: A Survey of a Representative Sample of Polish Citizens. \u003cem\u003eHealthcare\u003c/em\u003e, \u003cem\u003e11\u003c/em\u003e(20), 2714. https://doi.org/10.3390/healthcare11202714 \u003c/p\u003e\n\u003cp\u003eRapini, M. S., Chiarini, T., Bittencourt, P., \u0026amp; Caliari, T. (2019). The intensity of private funding and the results of university? Firm interactions: the case of Brazil. \u003cem\u003eINMR - Innovation \u0026amp; Management Review\u003c/em\u003e, \u003cem\u003e16\u003c/em\u003e(2), 161-184. https://doi.org/10.1108/INMR-11-2018-0088 \u003c/p\u003e\n\u003cp\u003eReis, F. P. D., \u0026amp; P\u0026ecirc;go-Fernandes, P. M. (2022). Biobank \u0026ndash; the key to personalized medicine. \u003cem\u003eSao Paulo Medical Journal\u003c/em\u003e, \u003cem\u003e140\u003c/em\u003e(5), 625-626. https://doi.org/10.1590/1516-3180.2022.1405.12072022 \u003c/p\u003e\n\u003cp\u003eRivera-Alc\u0026aacute;ntara, J. A., Esparza-Hurtado, N., Gal\u0026aacute;n-Ram\u0026iacute;rez, G. A., Cruz-Bautista, I., Mehta, R., Aguilar-Salinas, C. A., \u0026amp; Martagon, A. J. (2024). A systematic review of biobanks in Latin America: Strengths and limitations for biomedical research. \u003cem\u003eThe International Journal of Biological Markers\u003c/em\u003e, \u003cem\u003e39\u003c/em\u003e(2), 91-106. https://doi.org/10.1177/03936155241239672 \u003c/p\u003e\n\u003cp\u003eRomano, V., Milne, R., \u0026amp; Mascalzoni, D. (2021). Italian public\u0026rsquo;s views on sharing genetic information and medical information: Findings from the \u0026lsquo;Your DNA, Your Say\u0026rsquo; study. \u003cem\u003eWellcome Open Research\u003c/em\u003e, \u003cem\u003e6\u003c/em\u003e, 180. https://doi.org/10.12688/wellcomeopenres.16909.1 \u003c/p\u003e\n\u003cp\u003eSaeki, S. (2022). Impact of the \u0026ldquo;Amendments to the Act of the Protection of Personal Information\u0026rdquo; to Global Health Research Conducted in Japanese Medical Facilities. \u003cem\u003eJournal of Epidemiology\u003c/em\u003e, \u003cem\u003e32\u003c/em\u003e(9), 438-438. https://doi.org/10.2188/jea.JE20220141 \u003c/p\u003e\n\u003cp\u003eSanderson, S. C., Brothers, K. B., Mercaldo, N. D., Clayton, E. W., Antommaria, A. H. M., Aufox, S. A., Brilliant, M. H., Campos, D., Carrell, D. S., Connolly, J., Conway, P., Fullerton, S. M., Garrison, N. A., Horowitz, C. R., Jarvik, G. P., Kaufman, D., Kitchner, T. E., Li, R., Ludman, E. J., \u0026hellip; Holm, I. A. (2017). Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US. \u003cem\u003eThe American Journal of Human Genetics\u003c/em\u003e, \u003cem\u003e100\u003c/em\u003e(3), 414-427. https://doi.org/10.1016/j.ajhg.2017.01.021 \u003c/p\u003e\n\u003cp\u003eSanz de Acedo Liz\u0026aacute;rraga, M. L., Sanz de Acedo Baquedano, M. T., \u0026amp; Mar\u0026iacute;a Cardelle-Elawar. (2007). Factors that affect decision making: Gender and age differences. \u003cem\u003eInternational Journal of Psychology and Psychological Therapy\u003c/em\u003e, \u003cem\u003e7\u003c/em\u003e(3), 381-391. \u003c/p\u003e\n\u003cp\u003eSohail, M., Palma-Mart\u0026iacute;nez, M. J., Chong, A. Y., Quinto-Cort\u0026eacute;s, C. D., Barberena-Jonas, C., Medina-Mu\u0026ntilde;oz, S. G., Ragsdale, A., Delgado-S\u0026aacute;nchez, G., Cruz-Hervert, L. P., Ferreyra-Reyes, L., Ferreira-Guerrero, E., Mongua-Rodr\u0026iacute;guez, N., Canizales-Quintero, S., Jimenez-Kaufmann, A., Moreno-Mac\u0026iacute;as, H., Aguilar-Salinas, C. A., Auckland, K., Cort\u0026eacute;s, A., Acu\u0026ntilde;a-Alonzo, V., \u0026hellip; Moreno-Estrada, A. (2023). Mexican Biobank advances population and medical genomics of diverse ancestries. \u003cem\u003eNature\u003c/em\u003e, \u003cem\u003e622\u003c/em\u003e(7984), 775-783. https://doi.org/10.1038/s41586-023-06560-0 \u003c/p\u003e\n\u003cp\u003eSpooner, K. K., Salemi, J. L., Salihu, H. M., \u0026amp; Zoorob, R. J. (2017). eHealth patient-provider communication in the United States: Interest, inequalities, and predictors. \u003cem\u003eJournal of the American Medical Informatics Association: JAMIA\u003c/em\u003e, \u003cem\u003e24\u003c/em\u003e(e1), e18-e27. https://doi.org/10.1093/jamia/ocw087 \u003c/p\u003e\n\u003cp\u003eTeufel, M., \u0026amp; Sobetzko, P. (2022). Reducing costs for DNA and RNA sequencing by sample pooling using a metagenomic approach. \u003cem\u003eBMC Genomics\u003c/em\u003e, \u003cem\u003e23\u003c/em\u003e(1), 613. https://doi.org/10.1186/s12864-022-08831-y \u003c/p\u003e\n\u003cp\u003eTosoni, S., Voruganti, I., Lajkosz, K., Habal, F., Murphy, P., Wong, R. K. S., Willison, D., Virtanen, C., Heesters, A., \u0026amp; Liu, F.-F. (2021). The use of personal health information outside the circle of care: Consent preferences of patients from an academic health care institution. \u003cem\u003eBMC Medical Ethics\u003c/em\u003e, \u003cem\u003e22\u003c/em\u003e(1), 29. https://doi.org/10.1186/s12910-021-00598-3 \u003c/p\u003e\n\u003cp\u003eTrinidad, S. B., Fullerton, S. M., Bares, J. M., Jarvik, G. P., Larson, E. B., \u0026amp; Burke, W. (2010). Genomic research and wide data sharing: Views of prospective participants. \u003cem\u003eGenetics in Medicine: Official Journal of the American College of Medical Genetics\u003c/em\u003e, \u003cem\u003e12\u003c/em\u003e(8), 486-495. https://doi.org/10.1097/GIM.0b013e3181e38f9e \u003c/p\u003e\n\u003cp\u003eVald\u0026eacute;s, E., \u0026amp; Lecaros, J. A. (2024). Biobanks and data interoperability in Latin America: Engendering high-quality evidence for the global research ecosystem. \u003cem\u003eFrontiers in Medicine\u003c/em\u003e, \u003cem\u003e11\u003c/em\u003e. https://doi.org/10.3389/fmed.2024.1481891 \u003c/p\u003e\n\u003cp\u003eVidgen, M. E., Kaladharan, S., Malacova, E., Hurst, C., \u0026amp; Waddell, N. (2020). Sharing genomic data from clinical testing with researchers: Public survey of expectations of clinical genomic data management in Queensland, Australia. \u003cem\u003eBMC Medical Ethics\u003c/em\u003e, \u003cem\u003e21\u003c/em\u003e(1), 119. https://doi.org/10.1186/s12910-020-00563-6 \u003c/p\u003e\n\u003cp\u003eVoigt, T. H., Holtz, V., Niemiec, E., Howard, H. C., Middleton, A., \u0026amp; Prainsack, B. (2020). Willingness to donate genomic and other medical data: Results from Germany. \u003cem\u003eEuropean Journal of Human Genetics\u003c/em\u003e, \u003cem\u003e28\u003c/em\u003e(8), 1000-1009. https://doi.org/10.1038/s41431-020-0611-2 \u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-community-genetics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jocg","sideBox":"Learn more about [Journal of Community Genetics](http://link.springer.com/journal/12685)","snPcode":"12687","submissionUrl":"https://submission.nature.com/new-submission/12687/3","title":"Journal of Community Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Data sharing, public attitudes, Latin America, ELSI, genetics","lastPublishedDoi":"10.21203/rs.3.rs-8226828/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8226828/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003e\"Your DNA, Your Say\" is an anonymous online survey covering attitudes towards genomic and medical data sharing for research purposes. This study aims to identify factors that influence willingness to donate genetic information in Latin America and explore concerns regarding data donation.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eResponses to the \u0026ldquo;Your DNA, Your Say\u0026rdquo; survey from participants in Argentina, Brazil, Costa Rica, and Mexico were analyzed. We created three indexes: a. \u0026ldquo;Willingness to donate\u0026rdquo; reflects disposition towards data sharing, b. \u0026ldquo;Know Me\u0026rdquo; measures levels of concern if genetic/medical information becomes known to others, c. \u0026ldquo;Against Me\u0026rdquo; measures levels of concern regarding direct negative consequences of loss of anonymity. Regression analyses were used to explore the relationship between sociodemographic variables and the three indexes.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eWillingness to donate data is higher when profit is not involved. Concerns measured by the \u0026ldquo;Know Me\u0026rdquo; index are lower among women and individuals with a high willingness to donate, and higher for individuals with tertiary education. For the \u0026ldquo;Against Me\u0026rdquo; index, concern decreases with age and willingness to donate, and values are higher for people that have children, are religious, and have university education. In general, young age, having children, tertiary education level, and showing reduced levels of concern are associated with a higher willingness to donate genetic information.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eThis is one of the first studies exploring what shapes attitudes toward genetic data sharing in Latin America. This knowledge can guide strategies to ensure inclusion and diversity in future genetic studies.\u003c/p\u003e","manuscriptTitle":"Your DNA, your concerns: Public attitudes toward donation of genomic data for research in four Latin American countries","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-12-08 11:26:04","doi":"10.21203/rs.3.rs-8226828/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-community-genetics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jocg","sideBox":"Learn more about [Journal of Community Genetics](http://link.springer.com/journal/12685)","snPcode":"12687","submissionUrl":"https://submission.nature.com/new-submission/12687/3","title":"Journal of Community Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"4df66b04-3dcc-4060-974a-18a4159c3b08","owner":[],"postedDate":"December 8th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-12-08T11:26:05+00:00","versionOfRecord":[],"versionCreatedAt":"2025-12-08 11:26:04","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8226828","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8226828","identity":"rs-8226828","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}