Reconsidering Autonomy: Asian Americans’ Use of Relational Autonomy in Organ Donation Decisions

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Alolod, Diana C. Litsas, Laura A. Siminoff This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5110495/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 02 Apr, 2025 Read the published version in BMC Medical Ethics → Version 1 posted 4 You are reading this latest preprint version Abstract Background As cultural contexts have gained increasing relevance in medical decision-making, the current mainstream definition of autonomy is insufficient. A viable alternative framework, relational autonomy posits that agents’ actions are influenced by and embedded in society and culture rather than occurring in isolation. To test the concept’s applicability, we examine whether Asian Americans in the study’s sample operationalize relational autonomy as a decisional approach in hypothetical scenarios about organ donation, a practice for which there is considerably lower enthusiasm compared to other racial groups in the US. Methods A national sample of Asian American adults were recruited from Qualtrics research panel. Participants completed a Think-Aloud interview containing scenarios in which they decide whether or not to: 1) become a registered donor at the motor vehicle department; 2) authorize organ donation for a close relative who unexpectedly died. The interview first elicited candid reactions to the scenarios, followed by probing participants’ rationale of their initial responses. Participants’ final decision to each scenario (whether or not to register; whether or not consent to surrogate authorization), as well as participants’ decisional approaches (individualistic vs relational) were coded using the constant comparison method. Results The sample (n = 40) mirrored the largest proportions of Asian Americans in the US; the plurality identified as Chinese (35%), Filipino (27.5%) and Indian (25%). In response to the organ donor registration prompt, a majority of respondents (57.5%) expressed they would employ the mainstream decisional approach of individualistic autonomy, and 42.5% would make the decision with a relational approach. In contrast, when responding to the surrogate authorization prompt, the majority (77.5%) described a relational approach when making the decision, to preserve familial harmony and honor their cultural heritage. Conclusions Use of individualistic and relational autonomy frameworks are situational for some individuals. Participants acknowledged the impact of personal, cultural, and societal elements on their decisional approach. The concept of relational autonomy has utility through its versatility in complex decision-making events and by accounting for multiple stakeholders without privileging the autonomy of a single decision-maker over others. Clinical trial number: not applicable Autonomy relational autonomy Think Aloud end-of-life organ donation organ procurement organization BACKGROUND Ethical and informed decision-making is an essential component of quality healthcare, especially in the context of sensitive health topics, such as end-of-life and post-mortem organ donation. While a cornerstone of decision-making is respect for autonomy, understanding the cultural context of autonomy is also an important factor and is spurring a reconsideration of the meaning and implementation of decisional autonomy (1–7). Beauchamp and Childress’ classic definition of autonomy derives lineally from Kant and is defined as a “form of personal liberty of action where the individual determines his own course of action in accordance with a plan chosen by him- or herself. The autonomous person is one who not only deliberates about, and chooses such plans, but can act based on such deliberations” (8). As such, the ideal of autonomy is that it resides wholly within an individual and is exercised unilaterally. This formulation of autonomy is now largely codified in laws, policies used by Institutional Review Boards governing informed consent for research, and in contemporary Western biomedical practice (9–12). More recently, however, theorists and researchers have argued that this commonly accepted understanding of autonomy fails to address the increasing complexities of medical practice, is intrinsically patriarchical (13), and is devoid of cultural context (14–17). This scrutiny reveals the inadequacy of the current mainstream definition of autonomy, which is highly prescriptive, derives from a single cultural and philosophical tradition, and does not capture the contextual and complex nature of medical decision-making. Bishop has criticized the highly individualized nature of informed consent as a ”myth,” arguing that individuals never really make decisions in complete isolation (18). In addition, recent literature has highlighted the tensions between the Western implementation of informed consent and individualistic autonomy and different Asian contexts (19,20), in which individual patients are inextricably situated within family units. Thus, scholars have increasingly deemed the individual-directed model of autonomy as essentially incompatible with understudied cultural settings and have called for its revision (17,21,22). Relational Autonomy as an Alternative Framework Proposed as a viable, alternative framework, relational autonomy has foundations in feminist ethics and is an umbrella term for views on autonomy that agents do not act in isolation and without influence of society and culture (13). Building on the work of Sherwin and colleagues (23,24), the current study operationalizes relational autonomy as a decisional approach of autonomy wherein decisions are made with consideration of and in conjunction with one’s relationships and within particular social, political, and economic conditions. Thus, the individual decision maker still exercises autonomy, but decision-making is derived from his/her embeddedness in family and society. Relational autonomy has support in empirical research and has become a useful lens for scientific inquiries about end-of-life decision-making among Asian and Asian American populations by accounting for values like the primacy of the family unit, holistic harmony, and familial duty (1,25–27). Extant work has suggested a movement away from individualistic notions of the patient as the sole decision-maker by demonstrating the critical roles played by a patient’s family (28–32). Other research has indicated that some patients even prefer to cede medical decision-making authority to family members (33,34). The topic of organ donation authorization offers insight to the range and complexity of possible decision-making approaches. There is a need to understand whether and how relational autonomy might be exercised among Asian Americans, whose own transplant needs are disproportionately high (35) due to higher rates of hepatitis and liver cancer, for which transplantation is the only curative option (36). Indeed, the proportion of Asian Americans on the US transplantation waitlist is nearly 40% higher than that of the general population (37,38). Nevertheless, Asian Americans have amongst the lowest donation rates in the US (39), resulting in lower odds of finding a donor match (40). This public health challenge is especially urgent given that Asian Americans are the fastest growing racial group in the country (35). The available research about Asian Americans and organ donation has largely focused on attitudinal and knowledge barriers toward organ donation (25,41–47). Objective By focusing on how Asian Americans approach the decision to (1) become a registered organ donor and (2) donate the organs of a deceased family member, the current study examines whether decisions related to organ donation are situated within perceived family views and the needs of their communities. This study sought to explicitly explore how Asian Americans make decisions for organ donation by examining how individual and relational autonomy are exercised in making these decisions. We also test whether decision-making approaches are situational or stable across two classic organ donation scenarios. METHODS This study builds on and was part of a larger investigation to identify the assets and barriers to organ donation among Asian American populations regionally and nationally. Guided by local stakeholder organizations representing Asian American communities and a community advisory board (CAB), earlier phases involved focus groups (25), the development and deployment of the largest national survey conducted on Asian Americans’ donation-related attitudes, behaviors, and knowledge to date (41), and the creation and testing of a social media campaign to increase awareness and encourage donor registration (42), Sample and Recruitment The research team utilized research panel services from Qualtrics LLC to facilitate, identify, and recruit a pool of panelists. Researchers sent initial study invitations by e-mail and conducted follow-up recruitment phone calls using a screening tool to confirm that participants self-identified as Asian American, were > 18 years of age and willing to participate in a telephone interview. Effort was made to generate a pool of participants that proportionately approximated the Asian American population. Individuals who worked in healthcare were excluded from the study. The study was deemed exempt by the Temple University IRB (#25254). Data Collection and Measurement Study participants completed a self-administered survey and a 60-minute interview. The survey collected social and demographic data, including gender, ethnicity, age, marital status, education level, total household income, country of birth, and year of immigration to the US, if applicable. With demonstrated validity in past studies (48–51), the interview employed a ‘Think Aloud’ method to elicit candid and spontaneous responses from study participants about medical decision-making (52). An interview guide was developed and consisted of two sections. In Section 1, participants were presented with two organ donation-related scenarios: 1) becoming a registered organ donor at the motor vehicle department, and 2) deciding about surrogate donation, or the donation of a family member’s organs in hospital following an unexpected death. (See Table 1) In Section 2 of the Think Aloud Interview, respondents were asked to describe the rationale behind their medical decision-making for each scenario. This provided participants the opportunity to verify their initial choices, clarify, and further elaborate for a fuller understanding of their responses. The main outcome of interest across both scenarios was the approach to decision-making, defined as individualistic or relational. Individualistic decision-making, based in the current normative definition of autonomy, considers only the wishes of the respondent. For example, a decisional approach was deemed individualistic if participants’ responses emphasized that the decision was theirs alone to make. Relational decision-making was defined as considering cultural norms and societal obligations, including consultation with or seeking to respect the wishes of family members. Table 1. Organ Donation Situational Vignettes in Think Aloud Interview Scenario 1 - Organ Donor Designation It is time for you to renew your driver’s license or state ID at your local motor vehicle agency. When you arrive, you are told to complete a form. One of the questions reads, “Would you like to register to be an organ and tissue donor?” What do you decide to do? Scenario 2 - Donation at the Bedside You receive a call from your local hospital and learn that an immediate family member of yours has been rushed to the emergency room after suffering an accident. You go to the hospital immediately. Unfortunately, you are told that your family member will not survive the accident. You are approached about the option to donate your family member’s organs and tissues for transplantation. Your family member did not designate themselves as an organ donor on their driver’s license and does not have a signed organ donor card. You also never discussed the possibility of donation with this family member. What do you do? Interviews were conducted by research staff trained in qualitative methods and were conducted via telephone or Microsoft Teams (Microsoft, Redmond, WA), depending on the participant’s preference. Interviews were audio-recorded and stored on a HIPAA-compliant platform. Participants received a $100 gift card after completing the interview. Recordings were de-identified and transcribed in preparation for analysis. Interview transcripts were uploaded to MAXQDA 2022 (VERBI Software, 2021). The domains from the interview guide were used as major coding categories for an initial coding schema, and additional codes were developed inductively using the constant comparative method (53). Codes were assigned for decisions about donor pre-designation (would register/would not register) and surrogate donation (authorize/refuse/unsure). Additionally, utterances were coded to denote the decisional approach of each respondent, either individualistic or relational. Two qualitatively trained research staff coded the transcripts, and a cultural anthropologist (GPA) oversaw this process to avoid coding drift. To ensure reliability, ten percent of the transcripts were selected at random and analyzed by an independent coder (GPA); an overall interrater reliability of 91.2% agreement was achieved. Descriptive statistics and frequency counts were calculated for reported sociodemographic data, scenario outcomes, and decisional approach. Sub-group analyses were also conducted by scenario outcome and decisional approach; a nonparametric measure of association (i.e. Fisher’s exact) measured the association between these and sociodemographic characteristics, such as sex, ethnicity, being born or raised in the US (yes/no), educational attainment, age group ( 55 years), or household income level. RESULTS Sample Characteristics Services provided by Qualtrics (described above) resulted in a pool of 116 potential participants from which 40 participants were contacted and completed an interview between November 2021 and January 2022. A plurality of participants self-reported ethnicity as Chinese (35%), Filipino (27.5%) and Indian (25%); 50% were female (see Table 2). The median age was 51.5 years with over half (52.5%) under 55 years, mirroring the median age of the decision-making population nationally.(54) More than half the sample were born or raised outside of the US (55%) and reported a median age of 24 years at time of immigration. Most participants were married or cohabitating (62.5%) with 92.5% having attained formal education beyond a high school degree and 45% reporting an annual household income of over $80,000. Interviews ranged from 29 to 94 minutes with a mean duration of 49 minutes. Table 2. Sample Sociodemographics Information (N=40) Characteristic N (%) Age (Median 51.5) Under 55 21 (52.5) Sex Female 20 (50) Ethnicity Chinese 14 (35.0) Filipino 11 (27.5) Indian 10 (25.0) Korean 3 (7.5) Pakistani 1 (2.5) Vietnamese 1 (2.5) Marital Status Married/Cohabitating 25 (62.5) Never married 12 (30.0) Widowed 2 (5.0) Divorced/Separated 1 (2.5) Nativity Not Born/Raised in US 22 (55.0) Born in US 9 (22.5) Raised in US 9 (22.5) Education Post-graduate Degree 15 (37.5) Bachelor’s Degree 17 (42.5) Some College 5 (12.5) HS or less 3 (7.5) Income NR/NA 4 (10.0) Less than $40K 8 (20.0) $40K - $80K 10 (25.0) More than $80K 18 (45.0) Registration and Organ Donation Decisions Study participants were presented with the scenario of being asked to register as an organ donor while renewing a driver’s license (See Table 1 for scenarios.) A majority of respondents (65.0%; n=26) expressed that they would be willing to register as an organ donor (Table 3). A second scenario (Table 1) described a decision to donate a family member’s organs post-mortem. Half of participants (50.0%; n=20) would authorize donation whereas 32.5% (n=13) would refuse donation, and 17.5% (n=7) were undecided (Table 4). Fisher’s exact test examined whether a decisional approach (i.e. individualistic vs. relational) was associated with decisions to register as a donor (Scenario 1) or donate a family member’s organs on death (Scenario 2). We found no statistically significant associations between decisional approach and choice outcomes with sex, ethnicity, being born or raised in the US (yes/no), educational attainment, age group ( 55), or household income level. Table 3. Willingness to Pre-register as an Organ Donor and Decisional Approach Pre-register as an organ donor? Yes N (%) No N (%) Individualistic 14 (53.8) 9 (64.3) Relational 12 (46.2) 5 (35.7) TOTAL 26 14 Table 4. Willingness to Authorize Donation and Decisional Approach Authorize surrogate donation? Yes N (%) No N (%) Undecided N (%) Individualistic 6 (30.0) 1 (7.7) 2 (28.6) Relational 14 (70.0) 12 (92.3) 5 (71.4) TOTAL 20 13 7 Decisional Approach in Becoming a Registered Organ Donor Individualistic Approach to Autonomy We examined how individuals made decisions about whether to become an organ donor by using the ‘Think Aloud’ methodology to help participants explain how they made their decisions. Of the 26 participants who would choose to register as a donor, 53.8% (n=14) approached decision-making individualistically. These participants expressed a belief that the decision was purely personal in nature and that there was no need for others’ input. Participants also explained their individualistic approach toward donor registration as not requiring approval from or consultation with others. Even for a participant, who had previously spoken about the importance of his family’s advice, stated that he would not want anyone else’s input about registering as an organ donor. He replied, “No… I’ll make the decision. I would not ask anyone for advice to whatever” (ID 112746; 45-year-old Chinese American). Recalling her last license renewal, a 67-year-old Chinese American female participant expressed that she was able to make the determination on her own and did not want others to interfere. She stated … it is a very personal decision, and I don’t need any other help in making that decision. I don’t really want to be swayed either way and this is something that you have to be comfortable yourself instead of “person A said this, and person B said something else.” So, no I did not. Mainly my own decision. And it is only your own decision that you can stand by it. (ID 48240) Similarly, an 18-year-old Korean American female asserted “I don’t think I’m going to consult with anyone because that’s my personal choice. And if I wanted to donate my organs, I don’t think anybody else has a say…” (ID 74511). Relational Approach to Autonomy A sizable proportion of the sample (42.5%; n=17) used a relational decisional framework to decide whether or not to register as an organ donor. For this set of participants, the decision was less about personal choice and more about factors of family expectations and culture or religious norms. Although donor registration at the motor vehicle’s department is typically completed independently, these participants stated that they would factor in the opinions and input of their families. For example, when asked if she would consult anyone about the decision, a 23-year-old Filipina American said, “I would refer to my family members [with] the final decision…I know that being an organ donor would save lives, but my family members’ [perspective] has much more priority than mine” (ID 83501). Similarly, another member of the sample responded, “I think I will talk to my husband at first… He’s the one that always helps me to figure things out.” (ID 98664; 35-year-old Indian American female) Other participants based their decision because they personally experienced the need for donation within their families and were acutely aware of the societal need for organs. A 33-year-old Pakistani American male participant explained [The decision] came naturally to me because some of my family members have had kidney transplants and stuff. So I know that there is a need for organs and everything. So I didn’t even think about it. I just like checked it. (ID 32026) A 63-year-old Indian American male likewise shared, “I had some relatives who had kidney transplant[s]. They were the recipient. So, I know the importance of it” (ID 19208). Other interviewees referred specifically to cultural conventions in their decision-making rationale. One participant affirmed I know [being a registered organ donor] is a good thing to do, but I just haven’t gotten to the point where I’m willing to donate my organs. And I don’t know why. That might be a cultural thing…I think in the Asian culture, when you die, you’re buried whole. And I think that’s instilled in me. So even though I know it’s better to donate, but I haven’t brought myself or mentally prepared to do that. (ID 77138; 63-year-old Chinese American female). Religion was also specifically cited to justify whether or not to become a registered organ donor. One participant said, [I]n our religion [Jain], it’s a cremation. We don’t bury. So, this dead body is going to be cremated. So, whether there is a heart or kidney inside is not different. But see if you can help someone prolong their life, that’s good. Someone give you blessing. Someone will appreciate it. And maybe then they can pay it forward, or their family can pay it forward. (ID 19208; 63-year-old Indian American male) Decisional Approach in Surrogate Organ Donation Individualistic Approach to Autonomy Participants were asked to respond to a second scenario in which they were asked to consider donating the organs of a close family member on death (Table 1). A minority (22.5%; n=9) of the sample made their decision using an individualistic approach. This small segment of participants articulated their sole authority as a surrogate decision maker. For example, while considering the donation of his parents’ organs, a 32-year-old Korean male asserted I’d have to use all the circumstances around me to make the best decision, which means ultimately that I’m coming up with the decision on my own. If I think that [my parents’] organs could help people here, that supersedes their own traditions. (ID 87740) Other participants reported that they would act based on the donor’s wishes to the best of their knowledge. For instance, one interviewee referred to the absence of donor registration. She explained: Well, since he didn’t sign up for anything, it is basically my family member’s decision, and it is not me... I would not do anything about it because it’s just you respecting the person… So I am not doing anything about it. (ID 22105; 40-year-old Filipina American) A 19-year-old Chinese American female participant said similarly I wouldn’t donate the organs... especially if they didn’t indicate before death what they wanted to do with their organs. So, I think it’s a pretty cut and dry situation for me. I wouldn’t do it. (ID 36111) Another interviewee responded similarly, saying “I mean it’s a very tricky question. But no, I will not donate organs. Unless I’ve discussed it with that family member and I know his or her wishes, I won’t” (ID 23757; 41-year-old Indian American male). Notably, the participants cited above all similarly used an individualistic decisional rationale but arrived at different decisions about surrogate donation. Relational Approach to Autonomy In contradistinction, a large majority (77.5%; n=31) described their decisional process in terms of what we defined as relational autonomy. This approach was used to avoid family conflict and to honor their cultural heritage. Participants were cognizant of the lifesaving aspects of organ donation and wanted to donate but only if it did not disrupt the harmony of the family. For example, a 23-year-old Filipina American participant who was personally in favor of organ donation stated: [I]f I have been in an accident like that… there’s no recovery for me. And then I think my parents or my family members will disagree about donating my organs, cause at first, being in an accident will be a terrorizing thing… I think for me, at the end, I’m not decided about this, but I think I would refer to my family members, the final decision, as I know that being an organ donor would save lives, but my family members have much more priority… (ID 83501) A On 43-year-old Chinese American female participant also indicated the need for conferring with family members to avoid conflict: If it’s my parents, I think I would pause and consult the other parent. So, if it’s my mom, I think I would consult my dad—at least ask and tell him my preference and ask. If it’s my son, I will consult with my husband. So, I do think there is some contingent relationship. I don’t want them to be surprised, and I will tell them my leanings and just make sure they don’t disagree. But, if they disagree, I will say ‘no’ [to organ donation] because I don’t think it’s something that I feel so strongly enough that I want to fight over it. I’m hoping they will say yes. (ID 71200) Another participant described needing to obtain his family’s consent: I have to take the consent of other family members and maybe convince them. It would not be my decision. Like it would be a consensus decision by family members with consultation and like other stuff. There might have been some heated discussions and stuff depending on the situation and the nature of relationship [to the deceased]… So, I mean, there’s this angle of mutilating the body of a dead person or something like that. Like some family members might have that, thinking that it’s kind of disrespectful to remove organs and stuff. So, you have to navigate very carefully. (ID 32026, 33-year-old Pakistani American male) An 18-year-old Korean female interviewee indicated that she would defer to her brother in the scenario. She explained: Just the fact that I might be naïve or innocent or emotional, so I might not think straight in the moment. He’s very logistical… He’s like, “This is what mom and dad would have wanted and this is what we’re gonna do.” (ID 74511) Those who adopted a relational decisional framework also cited individuals in need of organ donation. A 32-year-old Indian American female participant said, “Like [my family member] couldn’t survive, but maybe they can save someone else’s life by their organs being donated” (ID 29392). Another interviewee stated, “Go ahead! Go ahead and take whatever you need... After all, a life is lost on one hand. Why not give somebody else a better chance of a better life on the other?” (ID 68534, 65-year-old Chinese American female). Similarly, one respondent recalled learning about the impact of organ donation saying, “sometimes you read in the news that people were saved because someone who was in an accident was able to donate lungs, heart, other organs, kidneys… And they were saved” (ID 83468, 68-year-old Filipino American). DISCUSSION The purpose of this study was to examine how Asian Americans exercise individual and relational autonomy in different decisional contexts about organ donation, focusing on how participants made their decisions rather than on the decisions themselves. The extant literature has underscored attitudinal and behavioral barriers to organ donation among Asian American populations ( 25 , 41 , 43 , 44 , 55 , 56 ). The low enthusiasm among the current sample of Asian American participants is consistent with prior national study results ( 41 , 57 ). Situational Contexts The use of situational vignettes and Think Aloud methodology provided insight into the participants’ decision-making frameworks. In the donor registration scenario, more respondents (57.5%) used an individualistic approach. We purport that this is a response to the DMV environment in which most people make this decision where organ donation is essentially distant, unrelated, and potentially unfamiliar occurrence. Nonetheless, a considerable proportion (42.5%) recognized and articulated a need to embed their decision within a framework of shared cultural values and religious beliefs. For one participant (ID 77138), culture dictated that the body must be kept whole and was effectively a barrier for registering as an organ donor, and for another participant (ID 19208), the religious tenets of Jainism was a justification for the opposite decision to register as a donor. These statements referenced a broader set of people (i.e. a family, a religious or ethnic community) and a belief that their decision was ‘answerable’ to others. Unlike when participants exercised individualistic autonomy, these factors were referenced as influences of shared beliefs, social embeddedness, and obligation. When faced with the hypothetical prospect of donating a family member’s organs, many more respondents were likely to use a relational autonomy framework when making their decision. To illustrate the difference, 42.5% used the relational autonomy framework in the first scenario, but 77.5% did so in the second scenario. Certain aspects are notable. First, the use of individualistic and relational autonomy frameworks is situational for some individuals. Unlike the first scenario in which most respondents had actually made this decision for themselves in a DMV – a usually solitary, official, and impersonal environment – the second scenario prompts respondents to project and decide what to do for someone else, i.e. a close family member. Prior work has pointed to the influence of family in authorizing donation,( 25 , 44 , 45 ) and the current data confirm that participants actively grapple with reconciling their own individual beliefs about organ donation and the views of their families, formal religious beliefs, and cultural expectations. Respondent 32026 exemplified these considerations. He recognized the emotional weight of the decision and expressed his decision as a function of negotiating the beliefs of family members and those of the deceased. His own beliefs were not articulated. As he and another respondent (ID 71200) indicated, the decision could be further complicated by the relational positions of the involved family members. As the data revealed, autonomy frameworks are dynamic, rather than static and situational. Whereas certain cultural groups may be more likely to use one or the other framework, it is likely that most individuals, no matter what their ethnic or religious affiliations move between these two autonomy frameworks. Implications for Practice This research demonstrates both the limitations of Western notions of autonomy and the need to operationalize an ethical framework that privileges the lived experiences and perspectives of culturally diverse patients rather than of academic philosophical frameworks. Indeed, this study indicates a moderate utilization of individualistic autonomy by study participants across two related but situationally distinct decisional contexts. Furthermore, interviewees acknowledged their decisions as a function of the personal, cultural, and societal elements that constitute their decisional approach. They attributed decisions to the need to align their decisions to others for the sake of family harmony and respect for traditions. Understanding decision-making within the framework of relational autonomy is particularly useful because it accounts for multiple decisional stakeholders without having to necessarily privilege the autonomy of a single decision maker over others. We also demonstrated that, at times, individuals who utilize relational autonomy in one decisional setting will employ individualistic autonomy in another context. The study’s findings demonstrate the utility of relational autonomy in understanding Asian Americans’ informational and emotional needs when making various decisions about organ donation. While much of the work on relational autonomy has focused on patients at the end-of-life ( 6 , 58 , 59 ), recent research has shown how incorporating relational autonomy into diverse clinical practice settings can aid healthcare providers in assessing patient and family needs and equipping them with sufficient information and support ( 3 , 60 – 64 ). Relational autonomy has even been incorporated into Japan’s guideline for Advanced Care Planning ( 65 ). Training organ procurement organization (OPO) staff to recognize the concept of relational autonomy poses potential opportunities. Identifying the use of relational autonomy can inform their interactions with the legal next-of-kin facing the surrogate donation decision by helping them negotiate the decision-making process while remaining respectful of the beliefs and values. Aside from anticipating concerns, such as mistrust in the healthcare system and lower enthusiasm about organ donation among minority groups ( 44 ), OPO donation professionals would be prepared to adopt more inclusive approaches involving multiple family members rather than an individual decision-maker. Additionally, a relational approach acknowledges that the needs of a decision maker will fluctuate, and management of donation discussions will require not only regular evaluation of situational needs but also responding with appropriate support. Furthermore, over half of participants in a national study of Asian Americans would authorize donation only if knew the deceased relative’s intentions ( 41 ), and the study findings further confirm the importance of knowing a loved one’s donation wishes. Accordingly, public education campaigns in Asian American communities could encourage family conversations about organ donation, designating themselves as donors through their state registries, while also addressing known concerns such concerns about illicit and underground markets for organs ( 25 ), keeping the body whole ( 43 , 44 , 55 , 56 ), and aversion to discussing topics related to death ( 25 ). Limitations This study, of course, has limitations. Because recruitment was facilitated using an online Qualtrics Panel, self-selection bias is possible, as those who participate would necessarily be proficient in and comfortable with computer use, as well as potentially more willing to participate in survey research. The present research sought to confirm insights gleaned from larger and national scale studies using a smaller sample to use qualitative methods that can add richness and context to extant survey data. The role of the demographic characteristics was statistically insignificant, but we recognize that a larger sample could yield different findings. CONCLUSIONS Although this report focuses on an Asian American sample, the concept of the relational autonomy likely has utility in understanding the decision-making process of other populations with regards to organ donation, in other medical settings, and amid emerging phenomena. The current study builds on prior research that suggests the inadequacy of an individualist-driven model of autonomy among Asian and Asian American communities ( 17 , 19 – 22 , 25 , 41 ). Similarly, available literature underscores the role of families in various health settings from many cultural and religious group ( 66 , 67 ), including those involving organ donation ( 68 – 70 ). Accordingly, future work examining medical decision-making in more broadly may benefit from applying the framework of relational autonomy. For example, the caregiving literature in cancer currently calls for a more family focused perspective although some not specifically situated within a relational autonomy framework ( 5 , 71 – 73 ). Relational autonomy maintains that decisions are made adjacent to social, political, and economic forces, rather than in isolation. Thus, the concept of relational autonomy may also be helpful in investigating how patients navigate decisions while healthcare access and delivery change over time. Declarations Ethics approval and consent to participate The study was deemed exempt by the Temple University IRB (#25254) Consent for publication Not applicable Availability of data and materials The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request Competing interests The authors declare that they have no competing interests Funding The work was funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Award R01 DK11488 (PI: Siminoff). Authors' contributions All authors wrote, read and approved the final manuscript. DL collected and analyzed data. GPA conceived of the project and analyzed data. LAS conceived of the project. Acknowledgements We thank the study participants for contributing to this research. We are also grateful to our Community Advisory Board Members – Ernest Arcilla, Jay Hilario, Grace Wu Kong, Ferdinand Luyun, Ruth Luyun, Shirley Moy, Jen Ordillas, Denise Schlatter, Stephanie Sun, Hanh Tran, Le-Quyen Vu, and Cecilia Vo – for their leadership and guidance with all aspects of this study. We also thank the Indochinese American Council, the Philadelphia Chinatown Development Corporation, and the Filipino Executive Council of Greater Philadelphia, for their partnership and support of the project. References Tan Kiak Min M. Beyond a Western Bioethics in Asia and Its Implication on Autonomy. New Bioeth. 2017 May 4;23(2):154–64. Asagumo A. Relational Autonomy, the Right to Reject Treatment, and Advance Directives in Japan. Asian Bioeth Rev. 2021 Oct 9;14(1):57–69. Dutta O, Lall P, Patinadan P, Car J, Low C, Tan WS, et al. 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J Racial Ethn Health Disparities. 2022 May 20; Siminoff LA, Chansiri K, Alolod G, Gardiner HM. Culturally Tailored and Community-Based Social Media Intervention to Promote Organ Donation Awareness among Asian Americans: “Heart of Gold.” J Health Commun. 2022 Jul 3;27(7):450–9. Albright CL, Wong LL, Cruz MRD, Sagayadoro T. Choosing to Be a Designated Organ Donor on Their First Driver’s License: Actions, Opinions, Intentions, and Barriers of Asian American and Pacific Islander Adolescents in Hawaii. Prog Transplant. 2010;20(4). Li MT, Hillyer GC, Husain SA, Mohan S. Cultural Barriers to Organ Donation among Chinese and Korean Individuals in the United States: A Systematic Review. Transpl Int Off J Eur Soc Organ Transplant. 2019 Oct;32(10):1001–18. Trompeta JA, Cooper BA, Ascher NL, Kools SM, Kennedy CM, Chen JL. Asian American Adolescents’ Willingness to Donate Organs and Engage in Family Discussion about Organ Donation and Transplantation. Prog Transplant. 2012 Mar;22(1):33–70. Pham H, Spigner C. Knowledge and opinions about organ donation and transplantation among Vietnamese Americans in Seattle, Washington: a pilot study. Clin Transplant. 2004 Dec;18(6):707–15. Park HS, Ryu JY, Oh YJ. Comparisons of Koreans, Korean Americans, and White Americans regarding deceased organ donation. J Health Psychol. 2020 Nov;25(13–14):2286–95. Siminoff LA. Factors Influencing Families’ Consent for Donation of Solid Organs for Transplantation. JAMA. 2001 Jul;286(1):71. Siminoff LA, Burant CJ, Ibrahim SA. Racial Disparities in Preferences and Perceptions Regarding Organ Donation. J Gen Intern Med. 2006 Jun;0(0):060721075157037-??? Siminoff LA, Mercer MB, Arnold R. Families’ understanding of brain death. Prog Transpl. 2003/10/16 ed. 2003;13(3):218–24. Siminoff LA, Burant C, Youngner SJ. Death and organ procurement: public beliefs and attitudes. Soc Sci Med. 2004 Dec;59(11):2325–34. Ericsson KA, Simon HA. Protocol analysis: Verbal reports as data, Rev. ed. Protocol analysis: Verbal reports as data, Rev. ed. The MIT Press; 1993. liii, 443–liii, 443. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research [Internet]. 1st ed. Routledge; 2017 [cited 2022 Oct 10]. Available from: https://www.taylorfrancis.com/books/9781351522168 May, Jr. S. Caregiving in the US 2020 | The National Alliance for Caregiving [Internet]. 2020 [cited 2024 Jan 22]. Available from: https://www.caregiving.org/research/caregiving-in-the-us/caregiving-in-the-us-2020/ Alden DL, Cheung AHS. Organ Donation and Culture: A Comparison of Asian American and European American Beliefs, Attitudes, and Behaviors. J Appl Soc Psychol. 2000 Feb;30(2):293–314. Nichols KLBR. DEATH AND DYING IN FOUR ASIAN AMERICAN CULTURES: A DESCRIPTIVE STUDY. Death Stud. 1997 Jul;21(4):327–59. U.S. Department of Health and Human Services, Health Resources and Services Administration. National Survey of Organ Donation Attitudes and Practices, 2019: Report of Findings. :213. Dove ES, Kelly SE, Lucivero F, Machirori M, Dheensa S, Prainsack B. Beyond individualism: Is there a place for relational autonomy in clinical practice and research? Clin Ethics. 2017;12(3):150–65. Wright MS. End of life and autonomy: the case for relational nudges in end-of-life decision-making law and policy. Md Rev. 2017;77:1062. Killackey T, Peter E, Maciver J, Mohammed S. Advance care planning with chronically ill patients: A relational autonomy approach. Nurs Ethics. 2020;27(2):360–71. Kokorelias KM, Gignac MAM, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019 Aug 13;19(1):564. Vilaseca RM, Galván-Bovaira MJ, González-del-Yerro A, Baqués N, Oliveira C, Simó-Pinatella D, et al. Training needs of professionals and the family-centered approach in Spain. J Early Interv. 2019;41(2):87–104. Wolff JL, Boyd CM. A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey. J Gen Intern Med. 2015 Oct 1;30(10):1497–504. Milena AP, Ramírez NZ, Ruiz JAR, Bayón AR, Ramírez JZ. Influencia del acompañante en las consultas de Atención Primaria sobre las habilidades en comunicación y el tiempo de entrevista. Aten Primaria Publ Of Soc Esp Fam Comunitaria. 2022;54(9):3. Miyashita J, Kishino M. Real-world experience implementing Advance Care Planning in the Asia-Pacific: ACP in Japan. Z Evid Fortbild Qual Gesundhwes . Chavez-Yenter D, Goodman MS, Chen Y, Chu X, Bradshaw RL, Chambers RL, et al. Association of disparities in family history and family cancer history in the electronic health record with sex, race, Hispanic or Latino ethnicity, and language preference in 2 large US health care systems. JAMA Netw Open. 2022;5(10):e2234574–e2234574. Floríndez LI, Floríndez DC, Como DH, Secola R, Duker LIS. Differing interpretations of health care encounters: A qualitative study of non-Latinx health care providers’ perceptions of Latinx patient behaviors. PLoS One. 2020;15(8):e0236706. Alvaro EM, Jones SP, Robles ASM, Siegel JT. Predictors of organ donation behavior among Hispanic Americans. Prog Transplant Aliso Viejo Calif. 2005 Jun;15(2):149–56. Rizzolo K, Cervantes L. Barriers and solutions to kidney transplantation for the undocumented latinx community with kidney failure. Clin J Am Soc Nephrol. 2021;16(10):1587–9. Ríos A, López‐Navas AI, García JA, Garrido G, Ayala‐García MA, Sebastián MJ, et al. The attitude of Latin American immigrants in Florida (USA) towards deceased organ donation–a cross section cohort study. Transpl Int. 2017;30(10):1020–31. Surbone A, Baider L. Are Oncologists Accountable Only to Patients or Also to Their Families? An International Perspective. Am Soc Clin Oncol Educ Book. 2012 Jun;(32):e15–9. 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Cite Share Download PDF Status: Published Journal Publication published 02 Apr, 2025 Read the published version in BMC Medical Ethics → Version 1 posted Editorial decision: Revision requested 22 Oct, 2024 Editor assigned by journal 04 Oct, 2024 Submission checks completed at journal 04 Oct, 2024 First submitted to journal 18 Sep, 2024 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. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5110495","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":368891130,"identity":"c8cb553f-23c2-46a0-ab2c-e9bfbcaf6b91","order_by":0,"name":"Gerard P. Alolod","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA3ElEQVRIiWNgGAWjYHACxgMMBQyM/WB2AYhIIKznAIMBA+PMNhDTgBQtG44Rq0U+uvnBgQ8GNrKb7zcf3VxgYMPAz55jgFeL4Z1jBgdnGKQZbzvGlnYbyGCQ7HlDQMuMBIPDPAaHE7cd4zG7DWQwGNwgZMuM9A9gLZvb+L8BtfxnsCekRV4iB2LLBjYeNqAWYFBIENBiIHOmAOyXGcfSzIB+SeaROPOsAL8ts9s3PvhQYSPb33z42e2CCjs5/vbkDfhtuYHEYQZiHrzKwbbMQNMyCkbBKBgFowADAAC6mkuDf95gFAAAAABJRU5ErkJggg==","orcid":"","institution":"Temple University","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Gerard","middleName":"P.","lastName":"Alolod","suffix":""},{"id":368891131,"identity":"d7742b64-6bcf-440b-b22b-aeabc6949733","order_by":1,"name":"Diana C. Litsas","email":"","orcid":"","institution":"Temple University","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Diana","middleName":"C.","lastName":"Litsas","suffix":""},{"id":368891132,"identity":"2502e50c-828a-442a-9d69-5622269aecec","order_by":2,"name":"Laura A. Siminoff","email":"","orcid":"","institution":"Temple University","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Laura","middleName":"A.","lastName":"Siminoff","suffix":""}],"badges":[],"createdAt":"2024-09-18 13:39:54","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5110495/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5110495/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12910-025-01206-4","type":"published","date":"2025-04-02T15:57:16+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":80082128,"identity":"5e1a3624-a5b2-4092-91ce-e1db47853c20","added_by":"auto","created_at":"2025-04-07 16:07:32","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":815825,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5110495/v1/6d5e5423-b6af-40f4-9d6c-abff960a310b.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Reconsidering Autonomy: Asian Americans’ Use of Relational Autonomy in Organ Donation Decisions","fulltext":[{"header":"BACKGROUND","content":"\u003cp\u003eEthical and informed decision-making is an essential component of quality healthcare, especially in the context of sensitive health topics, such as end-of-life and post-mortem organ donation. While a cornerstone of decision-making is respect for autonomy, understanding the cultural context of autonomy is also an important factor and is spurring a reconsideration of the meaning and implementation of decisional autonomy (1\u0026ndash;7). Beauchamp and Childress\u0026rsquo; classic definition of autonomy derives lineally from Kant and is defined as a \u0026ldquo;form of personal liberty of action where the individual determines his own course of action in accordance with a plan chosen by him- or herself. The autonomous person is one who not only deliberates about, and chooses such plans, but can act based on such deliberations\u0026rdquo; (8). As such, the ideal of autonomy is that it resides wholly within an individual and is exercised unilaterally. This formulation of autonomy is now largely codified in laws, policies used by Institutional Review Boards governing informed consent for research, and in contemporary Western biomedical practice (9\u0026ndash;12). \u003c/p\u003e\n\u003cp\u003eMore recently, however, theorists and researchers have argued that this commonly accepted understanding of autonomy fails to address the increasing complexities of medical practice, is intrinsically patriarchical (13), and is devoid of cultural context (14\u0026ndash;17). This scrutiny reveals the inadequacy of the current mainstream definition of autonomy, which is highly prescriptive, derives from a single cultural and philosophical tradition, and does not capture the contextual and complex nature of medical decision-making. Bishop has criticized the highly individualized nature of informed consent as a \u0026rdquo;myth,\u0026rdquo; arguing that individuals never really make decisions in complete isolation (18). In addition, recent literature has highlighted the tensions between the Western implementation of informed consent and individualistic autonomy and different Asian contexts (19,20), in which individual patients are inextricably situated within family units. Thus, scholars have increasingly deemed the individual-directed model of autonomy as essentially incompatible with understudied cultural settings and have called for its revision (17,21,22).\u003cem\u003e \u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eRelational Autonomy as an Alternative Framework\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eProposed as a viable, alternative framework, relational autonomy has foundations in feminist ethics and is an umbrella term for views on autonomy that agents do not act in isolation and without influence of society and culture (13). Building on the work of Sherwin and colleagues (23,24), the current study operationalizes relational autonomy as a decisional approach of autonomy wherein decisions are made with consideration of and in conjunction with one\u0026rsquo;s relationships and within particular social, political, and economic conditions. Thus, the individual decision maker still exercises autonomy, but decision-making is derived from his/her embeddedness in family and society. \u003c/p\u003e\n\u003cp\u003eRelational autonomy has support in empirical research and has become a useful lens for scientific inquiries about end-of-life decision-making among Asian and Asian American populations by accounting for values like the primacy of the family unit, holistic harmony, and familial duty (1,25\u0026ndash;27). Extant work has suggested a movement away from individualistic notions of the patient as the sole decision-maker by demonstrating the critical roles played by a patient\u0026rsquo;s family (28\u0026ndash;32). Other research has indicated that some patients even prefer to cede medical decision-making authority to family members (33,34). \u003c/p\u003e\n\u003cp\u003eThe topic of organ donation authorization offers insight to the range and complexity of possible decision-making approaches. There is a need to understand whether and how relational autonomy might be exercised among Asian Americans, whose own transplant needs are disproportionately high (35) due to higher rates of hepatitis and liver cancer, for which transplantation is the only curative option (36). Indeed, the proportion of Asian Americans on the US transplantation waitlist is nearly 40% higher than that of the general population (37,38). Nevertheless, Asian Americans have amongst the lowest donation rates in the US (39), resulting in lower odds of finding a donor match (40). This public health challenge is especially urgent given that Asian Americans are the fastest growing racial group in the country (35). \u003c/p\u003e\n\u003cp\u003eThe available research about Asian Americans and organ donation has largely focused on attitudinal and knowledge barriers toward organ donation (25,41\u0026ndash;47). \u003cstrong\u003e\u003cem\u003e \u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eObjective\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBy focusing on how Asian Americans approach the decision to (1) become a registered organ donor and (2) donate the organs of a deceased family member, the current study examines whether decisions related to organ donation are situated within perceived family views and the needs of their communities. This study sought to explicitly explore how Asian Americans make decisions for organ donation by examining how individual and relational autonomy are exercised in making these decisions. We also test whether decision-making approaches are situational or stable across two classic organ donation scenarios. \u003c/p\u003e"},{"header":"METHODS","content":"\u003cp\u003eThis study builds on and was part of a larger investigation to identify the assets and barriers to organ donation among Asian American populations regionally and nationally. Guided by local stakeholder organizations representing Asian American communities and a community advisory board (CAB), earlier phases involved focus groups (25), the development and deployment of the largest national survey conducted on Asian Americans\u0026rsquo; donation-related attitudes, behaviors, and knowledge to date (41), and the creation and testing of a social media campaign to increase awareness and encourage donor registration (42), \u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e \u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eSample and Recruitment \u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe research team utilized research panel services from Qualtrics LLC to facilitate, identify, and recruit a pool of panelists. Researchers sent initial study invitations by e-mail and conducted follow-up recruitment phone calls using a screening tool to confirm that participants self-identified as Asian American, were \u003cu\u003e\u0026gt;\u003c/u\u003e 18 years of age and willing to participate in a telephone interview. Effort was made to generate a pool of participants that proportionately approximated the Asian American population. Individuals who worked in healthcare were excluded from the study. The study was deemed exempt by the Temple University IRB (#25254).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e \u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eData Collection and Measurement\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStudy participants completed a self-administered survey and a 60-minute interview. The survey collected social and demographic data, including gender, ethnicity, age, marital status, education level, total household income, country of birth, and year of immigration to the US, if applicable. With demonstrated validity in past studies (48\u0026ndash;51), the interview employed a \u0026lsquo;Think Aloud\u0026rsquo; method to elicit candid and spontaneous responses from study participants about medical decision-making (52). An interview guide was developed and consisted of two sections. In Section 1, participants were presented with two organ donation-related scenarios: 1) becoming a registered organ donor at the motor vehicle department, and 2) deciding about surrogate donation, or the donation of a family member\u0026rsquo;s organs in hospital following an unexpected death. (See Table 1) In Section 2 of the Think Aloud Interview, respondents were asked to describe the rationale behind their medical decision-making for each scenario. This provided participants the opportunity to verify their initial choices, clarify, and further elaborate for a fuller understanding of their responses.\u003c/p\u003e\n\u003cp\u003eThe main outcome of interest across both scenarios was the approach to decision-making, defined as individualistic or relational. \u003cu\u003eIndividualistic\u003c/u\u003e decision-making, based in the current normative definition of autonomy, considers only the wishes of the respondent. For example, a decisional approach was deemed individualistic if participants\u0026rsquo; responses emphasized that the decision was theirs alone to make. \u003cu\u003eRelational\u003c/u\u003e decision-making was defined as considering cultural norms and societal obligations, including consultation with or seeking to respect the wishes of family members.\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" \u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 100%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable 1. Organ Donation Situational Vignettes in Think Aloud Interview\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 100%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eScenario 1 - Organ Donor Designation\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eIt is time for you to renew your driver\u0026rsquo;s license or state ID at your local motor vehicle agency. When you arrive, you are told to complete a form. One of the questions reads, \u0026ldquo;Would you like to register to be an organ and tissue donor?\u0026rdquo; What do you decide to do?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 100%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eScenario 2 - Donation at the Bedside\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eYou receive a call from your local hospital and learn that an immediate family member of yours has been rushed to the emergency room after suffering an accident. You go to the hospital immediately. Unfortunately, you are told that your family member will not survive the accident. You are approached about the option to donate your family member\u0026rsquo;s organs and tissues for transplantation. Your family member did not designate themselves as an organ donor on their driver\u0026rsquo;s license and does not have a signed organ donor card. You also never discussed the possibility of donation with this family member. What do you do?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eInterviews were conducted by research staff trained in qualitative methods and were conducted via telephone or Microsoft Teams (Microsoft, Redmond, WA), depending on the participant\u0026rsquo;s preference. Interviews were audio-recorded and stored on a HIPAA-compliant platform. Participants received a $100 gift card after completing the interview. Recordings were de-identified and transcribed in preparation for analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e \u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInterview transcripts were uploaded to MAXQDA 2022 (VERBI Software, 2021). The domains from the interview guide were used as major coding categories for an initial coding schema, and additional codes were developed inductively using the constant comparative method (53). Codes were assigned for decisions about donor pre-designation (would register/would not register) and surrogate donation (authorize/refuse/unsure). Additionally, utterances were coded to denote the decisional approach of each respondent, either individualistic or relational. Two qualitatively trained research staff coded the transcripts, and a cultural anthropologist (GPA) oversaw this process to avoid coding drift. To ensure reliability, ten percent of the transcripts were selected at random and analyzed by an independent coder (GPA); an overall interrater reliability of 91.2% agreement was achieved. \u003c/p\u003e\n\u003cp\u003eDescriptive statistics and frequency counts were calculated for reported sociodemographic data, scenario outcomes, and decisional approach. Sub-group analyses were also conducted by scenario outcome and decisional approach; a nonparametric measure of association (i.e. Fisher\u0026rsquo;s exact) measured the association between these and sociodemographic characteristics, such as sex, ethnicity, being born or raised in the US (yes/no), educational attainment, age group (\u0026lt; 55 and \u003cu\u003e\u0026gt;\u003c/u\u003e 55 years), or household income level.\u003c/p\u003e"},{"header":"RESULTS","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003eSample Characteristics\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eServices provided by Qualtrics (described above) resulted in a pool of 116 potential participants from which 40 participants were contacted and completed an interview between November 2021 and January 2022. A plurality of participants self-reported ethnicity as Chinese (35%), Filipino (27.5%) and Indian (25%); 50% were female (see Table 2). The median age was 51.5 years with over half (52.5%) under 55 years, mirroring the median age of the decision-making population nationally.(54) More than half the sample were born or raised outside of the US (55%) and reported a median age of 24 years at time of immigration. Most participants were married or cohabitating (62.5%) with 92.5% having attained formal education beyond a high school degree and 45% reporting an annual household income of over $80,000. Interviews ranged from 29 to 94 minutes with a mean duration of 49 minutes.\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" align=\"\" width=\"367\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"bottom\" style=\"width: 100%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable 2. Sample Sociodemographics\u0026nbsp;Information (N=40)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 58.8556%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCharacteristic\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 19.346%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eN\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" style=\"width: 100%;\"\u003e\n \u003cp\u003eAge (Median 51.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eUnder 55\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e21\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(52.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"bottom\" style=\"width: 100%;\"\u003e\n \u003cp\u003eSex\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(50)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"bottom\" style=\"width: 100%;\"\u003e\n \u003cp\u003eEthnicity\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eChinese\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(35.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eFilipino\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(27.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eIndian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(25.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eKorean\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(7.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003ePakistani\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(2.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eVietnamese\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(2.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"bottom\" style=\"width: 100%;\"\u003e\n \u003cp\u003eMarital Status\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eMarried/Cohabitating\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(62.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eNever married\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(30.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eWidowed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(5.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eDivorced/Separated\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(2.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"bottom\" style=\"width: 100%;\"\u003e\n \u003cp\u003eNativity\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eNot Born/Raised in US\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(55.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eBorn in US\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(22.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eRaised in US\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(22.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"bottom\" style=\"width: 100%;\"\u003e\n \u003cp\u003eEducation\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003ePost-graduate Degree\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(37.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eBachelor\u0026rsquo;s Degree\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(42.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eSome College\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(12.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eHS or less\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(7.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"bottom\" style=\"width: 100%;\"\u003e\n \u003cp\u003eIncome\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eNR/NA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(10.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eLess than $40K\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(20.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003e$40K - $80K\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(25.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 58.8556%;\"\u003e\n \u003cp\u003eMore than $80K\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 19.346%;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 21.7984%;\"\u003e\n \u003cp\u003e(45.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 0%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eRegistration and Organ Donation Decisions\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStudy participants were presented with the scenario of being asked to register as an organ donor while renewing a driver\u0026rsquo;s license (See Table 1 for scenarios.) A majority of respondents (65.0%; n=26) expressed that they would be willing to register as an organ donor (Table 3). A second scenario (Table 1) described a decision to donate a family member\u0026rsquo;s organs post-mortem. Half of participants (50.0%; n=20) would authorize donation whereas 32.5% (n=13) would refuse donation, and 17.5% (n=7) were undecided (Table 4). Fisher\u0026rsquo;s exact test examined whether a decisional approach\u0026nbsp;(i.e. individualistic vs. relational) was associated with decisions to register as a donor (Scenario 1) or donate a family member\u0026rsquo;s organs on death (Scenario 2). We found no statistically significant associations between decisional approach and choice outcomes with sex, ethnicity, being born or raised in the US (yes/no), educational attainment, age group (\u0026lt;55 and \u003cu\u003e\u0026gt;\u003c/u\u003e55), or household income level. \u003cstrong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" align=\"\" width=\"630\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 630px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable 3. Willingness to Pre-register as an Organ Donor and Decisional Approach\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: 222px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" style=\"width: 408px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePre-register as an organ donor?\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 188px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eYes\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 220px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNo\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 222px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eIndividualistic\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 188px;\"\u003e\n \u003cp\u003e14 (53.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 220px;\"\u003e\n \u003cp\u003e9 (64.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 222px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelational\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 188px;\"\u003e\n \u003cp\u003e12 (46.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 220px;\"\u003e\n \u003cp\u003e5 (35.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 222px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTOTAL\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 188px;\"\u003e\n \u003cp\u003e26\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 220px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"576\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" style=\"width: 576px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable 4. Willingness to Authorize Donation and Decisional Approach\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" style=\"width: 222px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"3\" style=\"width: 354px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAuthorize surrogate donation?\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eYes\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNo\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eUndecided\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 222px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eIndividualistic\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e6 (30.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e1 (7.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e2 (28.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 222px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelational\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e14 (70.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e12 (92.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e5 (71.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 222px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTOTAL\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 118px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eDecisional Approach in Becoming a Registered Organ Donor\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eIndividualistic Approach to Autonomy\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWe examined how individuals made decisions about whether to become an organ donor by using the \u0026lsquo;Think Aloud\u0026rsquo; methodology to help participants explain \u003cem\u003ehow\u003c/em\u003e they made their decisions. Of the 26 participants who would choose to register as a donor, 53.8% (n=14) approached decision-making individualistically. These participants expressed a belief that the decision was purely personal in nature and that there was no need for others\u0026rsquo; input. Participants also explained their individualistic approach toward donor registration as not requiring approval from or consultation with others. Even for a participant, who had previously spoken about the importance of his family\u0026rsquo;s advice, stated that he would not want anyone else\u0026rsquo;s input about registering as an organ donor. He replied, \u0026ldquo;No\u0026hellip; I\u0026rsquo;ll make the decision. I would not ask anyone for advice to whatever\u0026rdquo; (ID 112746; 45-year-old Chinese American). Recalling her last license renewal, a 67-year-old Chinese American female participant expressed that she was able to make the determination on her own and did not want others to interfere. She stated\u003c/p\u003e\n\u003cp\u003e\u0026hellip; it is a very personal decision, and I don\u0026rsquo;t need any other help in making that decision. I don\u0026rsquo;t really want to be swayed either way and this is something that you have to be comfortable yourself instead of \u0026ldquo;person A said this, and person B said something else.\u0026rdquo; So, no I did not. Mainly my own decision. And it is only your own decision that you can stand by it. (ID 48240)\u003c/p\u003e\n\u003cp\u003eSimilarly, an 18-year-old Korean American female asserted \u0026ldquo;I don\u0026rsquo;t think I\u0026rsquo;m going to consult with anyone because that\u0026rsquo;s my personal choice. And if I wanted to donate my organs, I don\u0026rsquo;t think anybody else has a say\u0026hellip;\u0026rdquo; (ID 74511).\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eRelational Approach to Autonomy\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eA sizable proportion of the sample (42.5%; n=17) used a relational decisional framework to decide whether or not to register as an organ donor. For this set of participants, the decision was less about personal choice and more about factors of family expectations and culture or religious norms. Although donor registration at the motor vehicle\u0026rsquo;s department is typically completed independently, these participants stated that they would factor in the opinions and input of their families. For example, when asked if she would consult anyone about the decision, a 23-year-old Filipina American said, \u0026ldquo;I would refer to my family members [with] the final decision\u0026hellip;I know that being an organ donor would save lives, but my family members\u0026rsquo; [perspective] has much more priority than mine\u0026rdquo; (ID 83501). Similarly, another member of the sample responded, \u0026ldquo;I think I will talk to my husband at first\u0026hellip; He\u0026rsquo;s the one that always helps me to figure things out.\u0026rdquo; (ID 98664; 35-year-old Indian American female)\u003c/p\u003e\n\u003cp\u003eOther participants based their decision because they personally experienced the need for donation within their families and were acutely aware of the societal need for organs. A 33-year-old Pakistani American male participant explained\u003c/p\u003e\n\u003cp\u003e[The decision] came naturally to me because some of my family members have had kidney transplants and stuff. So I know that there is a need for organs and everything. So I didn\u0026rsquo;t even think about it. I just like checked it. (ID 32026)\u003c/p\u003e\n\u003cp\u003eA 63-year-old Indian American male likewise shared, \u0026ldquo;I had some relatives who had kidney transplant[s]. They were the recipient. So, I know the importance of it\u0026rdquo; (ID 19208).\u003c/p\u003e\n\u003cp\u003eOther interviewees referred specifically to cultural conventions in their decision-making rationale. One participant affirmed\u003c/p\u003e\n\u003cp\u003eI know [being a registered organ donor] is a good thing to do, but I just haven\u0026rsquo;t gotten to the point where I\u0026rsquo;m willing to donate my organs. And I don\u0026rsquo;t know why. That might be a cultural thing\u0026hellip;I think in the Asian culture, when you die, you\u0026rsquo;re buried whole. And I think that\u0026rsquo;s instilled in me. So even though I know it\u0026rsquo;s better to donate, but I haven\u0026rsquo;t brought myself or mentally prepared to do that. (ID 77138; 63-year-old Chinese American female).\u003c/p\u003e\n\u003cp\u003eReligion was also specifically cited to justify whether or not to become a registered organ donor. One participant said,\u003c/p\u003e\n\u003cp\u003e[I]n our religion [Jain], it\u0026rsquo;s a cremation. We don\u0026rsquo;t bury. So, this dead body is going to be cremated. So, whether there is a heart or kidney inside is not different. But see if you can help someone prolong their life, that\u0026rsquo;s good. Someone give you blessing. Someone will appreciate it. And maybe then they can pay it forward, or their family can pay it forward. (ID 19208; 63-year-old Indian American male)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eDecisional Approach in Surrogate Organ Donation\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eIndividualistic Approach to Autonomy\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants were asked to respond to a second scenario in which they were asked to consider donating the organs of a close family member on death (Table 1). A minority (22.5%; n=9) of the sample made their decision using an individualistic approach. This small segment of participants articulated their sole authority as a surrogate decision maker. For example, while considering the donation of his parents\u0026rsquo; organs, a 32-year-old Korean male asserted\u003c/p\u003e\n\u003cp\u003eI\u0026rsquo;d have to use all the circumstances around me to make the best decision, which means ultimately that I\u0026rsquo;m coming up with the decision on my own. If I think that [my parents\u0026rsquo;] organs could help people here, that supersedes their own traditions. (ID 87740)\u003c/p\u003e\n\u003cp\u003eOther participants reported that they would act based on the donor\u0026rsquo;s wishes to the best of their knowledge. For instance, one interviewee referred to the absence of donor registration. She explained:\u003c/p\u003e\n\u003cp\u003eWell, since he didn\u0026rsquo;t sign up for anything, it is basically my family member\u0026rsquo;s decision, and it is not me... I would not do anything about it because it\u0026rsquo;s just you respecting the person\u0026hellip; So I am not doing anything about it. (ID 22105; 40-year-old Filipina American)\u003c/p\u003e\n\u003cp\u003eA 19-year-old Chinese American female participant said similarly\u003c/p\u003e\n\u003cp\u003eI wouldn\u0026rsquo;t donate the organs... especially if they didn\u0026rsquo;t indicate before death what they wanted to do with their organs. So, I think it\u0026rsquo;s a pretty cut and dry situation for me. I wouldn\u0026rsquo;t do it. (ID 36111)\u003c/p\u003e\n\u003cp\u003eAnother interviewee responded similarly, saying \u0026ldquo;I mean it\u0026rsquo;s a very tricky question. But no, I will not donate organs. Unless I\u0026rsquo;ve discussed it with that family member and I know his or her wishes, I won\u0026rsquo;t\u0026rdquo; (ID 23757; 41-year-old Indian American male). Notably, the participants cited above all similarly used an individualistic decisional rationale but arrived at different decisions about surrogate donation.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eRelational Approach to Autonomy\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn contradistinction, a large majority (77.5%; n=31) described their decisional process in terms of what we defined as relational autonomy. This approach was used to avoid family conflict and to honor their cultural heritage. Participants were cognizant of the lifesaving aspects of organ donation and wanted to donate but only if it did not disrupt the harmony of the family. For example, a 23-year-old Filipina American participant who was personally in favor of organ donation stated:\u003c/p\u003e\n\u003cp\u003e[I]f I have been in an accident like that\u0026hellip; there\u0026rsquo;s no recovery for me. And then I think my parents or my family members will disagree about donating my organs, cause at first, being in an accident will be a terrorizing thing\u0026hellip; I think for me, at the end, I\u0026rsquo;m not decided about this, but I think I would refer to my family members, the final decision, as I know that being an organ donor would save lives, but my family members have much more priority\u0026hellip; (ID 83501)\u003c/p\u003e\n\u003cp\u003eA On 43-year-old Chinese American female participant also indicated the need for conferring with family members to avoid conflict:\u003c/p\u003e\n\u003cp\u003eIf it\u0026rsquo;s my parents, I think I would pause and consult the other parent. So, if it\u0026rsquo;s my mom, I think I would consult my dad\u0026mdash;at least ask and tell him my preference and ask. If it\u0026rsquo;s my son, I will consult with my husband. So, I do think there is some contingent relationship. I don\u0026rsquo;t want them to be surprised, and I will tell them my leanings and just make sure they don\u0026rsquo;t disagree. But, if they disagree, I will say \u0026lsquo;no\u0026rsquo; [to organ donation] because I don\u0026rsquo;t think it\u0026rsquo;s something that I feel so strongly enough that I want to fight over it. I\u0026rsquo;m hoping they will say yes. (ID 71200)\u003c/p\u003e\n\u003cp\u003eAnother participant described needing to obtain his family\u0026rsquo;s consent:\u003c/p\u003e\n\u003cp\u003eI have to take the consent of other family members and maybe convince them. It would not be my decision. Like it would be a consensus decision by family members with consultation and like other stuff. There might have been some heated discussions and stuff depending on the situation and the nature of relationship [to the deceased]\u0026hellip; So, I mean, there\u0026rsquo;s this angle of mutilating the body of a dead person or something like that. Like some family members might have that, thinking that it\u0026rsquo;s kind of disrespectful to remove organs and stuff. So, you have to navigate very carefully. (ID 32026, 33-year-old Pakistani American male)\u003c/p\u003e\n\u003cp\u003eAn 18-year-old Korean female interviewee indicated that she would defer to her brother in the scenario. She explained:\u003c/p\u003e\n\u003cp\u003eJust the fact that I might be na\u0026iuml;ve or innocent or emotional, so I might not think straight in the moment. He\u0026rsquo;s very logistical\u0026hellip; He\u0026rsquo;s like, \u0026ldquo;This is what mom and dad would have wanted and this is what we\u0026rsquo;re gonna do.\u0026rdquo; (ID 74511)\u003c/p\u003e\n\u003cp\u003eThose who adopted a relational decisional framework also cited individuals in need of organ donation. A 32-year-old Indian American female participant said, \u0026ldquo;Like [my family member] couldn\u0026rsquo;t survive, but maybe they can save someone else\u0026rsquo;s life by their organs being donated\u0026rdquo; (ID 29392). Another interviewee stated, \u0026ldquo;Go ahead! Go ahead and take whatever you need... After all, a life is lost on one hand. Why not give somebody else a better chance of a better life on the other?\u0026rdquo; (ID 68534, 65-year-old Chinese American female). Similarly, one respondent recalled learning about the impact of organ donation saying, \u0026ldquo;sometimes you read in the news that people were saved because someone who was in an accident was able to donate lungs, heart, other organs, kidneys\u0026hellip; And they were saved\u0026rdquo; (ID 83468, 68-year-old Filipino American).\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThe purpose of this study was to examine how Asian Americans exercise individual and relational autonomy in different decisional contexts about organ donation, focusing on \u003cem\u003ehow\u003c/em\u003e participants made their decisions rather than on the decisions themselves. The extant literature has underscored attitudinal and behavioral barriers to organ donation among Asian American populations (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e, \u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e). The low enthusiasm among the current sample of Asian American participants is consistent with prior national study results (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eSituational Contexts\u003c/h2\u003e \u003cp\u003e The use of situational vignettes and Think Aloud methodology provided insight into the participants\u0026rsquo; decision-making frameworks. In the donor registration scenario, more respondents (57.5%) used an individualistic approach. We purport that this is a response to the DMV environment in which most people make this decision where organ donation is essentially distant, unrelated, and potentially unfamiliar occurrence. Nonetheless, a considerable proportion (42.5%) recognized and articulated a need to embed their decision within a framework of shared cultural values and religious beliefs. For one participant (ID 77138), culture dictated that the body must be kept whole and was effectively a barrier for registering as an organ donor, and for another participant (ID 19208), the religious tenets of Jainism was a justification for the opposite decision to register as a donor. These statements referenced a broader set of people (i.e. a family, a religious or ethnic community) and a belief that their decision was \u0026lsquo;answerable\u0026rsquo; to others. Unlike when participants exercised individualistic autonomy, these factors were referenced as influences of shared beliefs, social embeddedness, and obligation.\u003c/p\u003e \u003cp\u003eWhen faced with the hypothetical prospect of donating a family member\u0026rsquo;s organs, many more respondents were likely to use a relational autonomy framework when making their decision. To illustrate the difference, 42.5% used the relational autonomy framework in the first scenario, but 77.5% did so in the second scenario. Certain aspects are notable. First, the use of individualistic and relational autonomy frameworks is situational for some individuals. Unlike the first scenario in which most respondents had actually made this decision for themselves in a DMV \u0026ndash; a usually solitary, official, and impersonal environment \u0026ndash; the second scenario prompts respondents to project and decide what to do for someone else, i.e. a close family member. Prior work has pointed to the influence of family in authorizing donation,(\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e) and the current data confirm that participants actively grapple with reconciling their own individual beliefs about organ donation and the views of their families, formal religious beliefs, and cultural expectations. Respondent 32026 exemplified these considerations. He recognized the emotional weight of the decision and expressed his decision as a function of negotiating the beliefs of family members and those of the deceased. His own beliefs were not articulated. As he and another respondent (ID 71200) indicated, the decision could be further complicated by the relational positions of the involved family members. As the data revealed, autonomy frameworks are dynamic, rather than static and situational. Whereas certain cultural groups may be more likely to use one or the other framework, it is likely that most individuals, no matter what their ethnic or religious affiliations move between these two autonomy frameworks.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eImplications for Practice\u003c/h2\u003e \u003cp\u003eThis research demonstrates both the limitations of Western notions of autonomy and the need to operationalize an ethical framework that privileges the lived experiences and perspectives of culturally diverse patients rather than of academic philosophical frameworks. Indeed, this study indicates a moderate utilization of individualistic autonomy by study participants across two related but situationally distinct decisional contexts. Furthermore, interviewees acknowledged their decisions as a function of the personal, cultural, and societal elements that constitute their decisional approach. They attributed decisions to the need to align their decisions to others for the sake of family harmony and respect for traditions. Understanding decision-making within the framework of relational autonomy is particularly useful because it accounts for multiple decisional stakeholders without having to necessarily privilege the autonomy of a single decision maker over others. We also demonstrated that, at times, individuals who utilize relational autonomy in one decisional setting will employ individualistic autonomy in another context.\u003c/p\u003e \u003cp\u003eThe study\u0026rsquo;s findings demonstrate the utility of relational autonomy in understanding Asian Americans\u0026rsquo; informational and emotional needs when making various decisions about organ donation. While much of the work on relational autonomy has focused on patients at the end-of-life (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e, \u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e), recent research has shown how incorporating relational autonomy into diverse clinical practice settings can aid healthcare providers in assessing patient and family needs and equipping them with sufficient information and support (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan additionalcitationids=\"CR61 CR62 CR63\" citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e). Relational autonomy has even been incorporated into Japan\u0026rsquo;s guideline for Advanced Care Planning (\u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eTraining organ procurement organization (OPO) staff to recognize the concept of relational autonomy poses potential opportunities. Identifying the use of relational autonomy can inform their interactions with the legal next-of-kin facing the surrogate donation decision by helping them negotiate the decision-making process while remaining respectful of the beliefs and values. Aside from anticipating concerns, such as mistrust in the healthcare system and lower enthusiasm about organ donation among minority groups (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e), OPO donation professionals would be prepared to adopt more inclusive approaches involving multiple family members rather than an individual decision-maker. Additionally, a relational approach acknowledges that the needs of a decision maker will fluctuate, and management of donation discussions will require not only regular evaluation of situational needs but also responding with appropriate support. Furthermore, over half of participants in a national study of Asian Americans would authorize donation only if knew the deceased relative\u0026rsquo;s intentions (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e), and the study findings further confirm the importance of knowing a loved one\u0026rsquo;s donation wishes. Accordingly, public education campaigns in Asian American communities could encourage family conversations about organ donation, designating themselves as donors through their state registries, while also addressing known concerns such concerns about illicit and underground markets for organs (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e), keeping the body whole (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e, \u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e), and aversion to discussing topics related to death (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThis study, of course, has limitations. Because recruitment was facilitated using an online Qualtrics Panel, self-selection bias is possible, as those who participate would necessarily be proficient in and comfortable with computer use, as well as potentially more willing to participate in survey research. The present research sought to confirm insights gleaned from larger and national scale studies using a smaller sample to use qualitative methods that can add richness and context to extant survey data. The role of the demographic characteristics was statistically insignificant, but we recognize that a larger sample could yield different findings.\u003c/p\u003e \u003c/div\u003e"},{"header":"CONCLUSIONS","content":"\u003cp\u003eAlthough this report focuses on an Asian American sample, the concept of the relational autonomy likely has utility in understanding the decision-making process of other populations with regards to organ donation, in other medical settings, and amid emerging phenomena. The current study builds on prior research that suggests the inadequacy of an individualist-driven model of autonomy among Asian and Asian American communities (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan additionalcitationids=\"CR20 CR21\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e). Similarly, available literature underscores the role of families in various health settings from many cultural and religious group (\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e, \u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e), including those involving organ donation (\u003cspan additionalcitationids=\"CR69\" citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e). Accordingly, future work examining medical decision-making in more broadly may benefit from applying the framework of relational autonomy. For example, the caregiving literature in cancer currently calls for a more family focused perspective although some not specifically situated within a relational autonomy framework (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan additionalcitationids=\"CR72\" citationid=\"CR71\" class=\"CitationRef\"\u003e71\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR73\" class=\"CitationRef\"\u003e73\u003c/span\u003e). Relational autonomy maintains that decisions are made adjacent to social, political, and economic forces, rather than in isolation. Thus, the concept of relational autonomy may also be helpful in investigating how patients navigate decisions while healthcare access and delivery change over time.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe study was deemed exempt by the Temple University IRB (#25254)\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analysed during the current study are available from the corresponding author on reasonable request\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe work was funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Award R01 DK11488 (PI: Siminoff).\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003eAuthors\u0026apos; contributions\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll authors wrote, read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003eDL collected and analyzed data.\u003c/p\u003e\n\u003cp\u003eGPA conceived of the project and analyzed data.\u003c/p\u003e\n\u003cp\u003eLAS conceived of the project. \u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWe thank the study participants for contributing to this research. We are also grateful to our Community Advisory Board Members \u0026ndash; Ernest Arcilla, Jay Hilario, Grace Wu Kong, Ferdinand Luyun, Ruth Luyun, Shirley Moy, Jen Ordillas, Denise Schlatter, Stephanie Sun, Hanh Tran, Le-Quyen Vu, and Cecilia Vo \u0026ndash; for their leadership and guidance with all aspects of this study. We also thank the Indochinese American Council, the Philadelphia Chinatown Development Corporation, and the Filipino Executive Council of Greater Philadelphia, for their partnership and support of the project.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e \u003c/em\u003e\u003c/p\u003e"},{"header":"References","content":"\n\u003col\u003e\n\u003cli\u003eTan Kiak Min M. Beyond a Western Bioethics in Asia and Its Implication on Autonomy. New Bioeth. 2017 May 4;23(2):154\u0026ndash;64. \u003c/li\u003e\n\u003cli\u003eAsagumo A. Relational Autonomy, the Right to Reject Treatment, and Advance Directives in Japan. 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Clin J Am Soc Nephrol. 2021;16(10):1587\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eR\u0026iacute;os A, L\u0026oacute;pez‐Navas AI, Garc\u0026iacute;a JA, Garrido G, Ayala‐Garc\u0026iacute;a MA, Sebasti\u0026aacute;n MJ, et al. The attitude of Latin American immigrants in Florida (USA) towards deceased organ donation\u0026ndash;a cross section cohort study. Transpl Int. 2017;30(10):1020\u0026ndash;31. \u003c/li\u003e\n\u003cli\u003eSurbone A, Baider L. Are Oncologists Accountable Only to Patients or Also to Their Families? An International Perspective. Am Soc Clin Oncol Educ Book. 2012 Jun;(32):e15\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eOtto AK, Ketcher D, Heyman RE, Vadaparampil ST, Ellington L, Reblin M. Communication between Advanced Cancer Patients and Their Family Caregivers: Relationship with Caregiver Burden and Preparedness for Caregiving. Health Commun. 2021 May;36(6):714\u0026ndash;21. \u003c/li\u003e\n\u003cli\u003eBracher M, Stewart S, Reidy C, Allen C, Townsend K, Brindle L. Partner involvement in treatment-related decision making in triadic clinical consultations - A systematic review of qualitative and quantitative studies. Patient Educ Couns. 2020 Feb;103(2):245\u0026ndash;53. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-ethics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"meth","sideBox":"Learn more about [BMC Medical Ethics](http://bmcmedethics.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/meth/default.aspx","title":"BMC Medical Ethics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Autonomy, relational autonomy, Think Aloud, end-of-life, organ donation, organ procurement organization","lastPublishedDoi":"10.21203/rs.3.rs-5110495/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5110495/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eAs cultural contexts have gained increasing relevance in medical decision-making, the current mainstream definition of autonomy is insufficient. A viable alternative framework, relational autonomy posits that agents\u0026rsquo; actions are influenced by and embedded in society and culture rather than occurring in isolation. To test the concept\u0026rsquo;s applicability, we examine whether Asian Americans in the study\u0026rsquo;s sample operationalize relational autonomy as a decisional approach in hypothetical scenarios about organ donation, a practice for which there is considerably lower enthusiasm compared to other racial groups in the US.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA national sample of Asian American adults were recruited from Qualtrics research panel. Participants completed a Think-Aloud interview containing scenarios in which they decide whether or not to: 1) become a registered donor at the motor vehicle department; 2) authorize organ donation for a close relative who unexpectedly died. The interview first elicited candid reactions to the scenarios, followed by probing participants\u0026rsquo; rationale of their initial responses. Participants\u0026rsquo; final decision to each scenario (whether or not to register; whether or not consent to surrogate authorization), as well as participants\u0026rsquo; decisional approaches (individualistic vs relational) were coded using the constant comparison method.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe sample (n\u0026thinsp;=\u0026thinsp;40) mirrored the largest proportions of Asian Americans in the US; the plurality identified as Chinese (35%), Filipino (27.5%) and Indian (25%). In response to the organ donor registration prompt, a majority of respondents (57.5%) expressed they would employ the mainstream decisional approach of individualistic autonomy, and 42.5% would make the decision with a relational approach. In contrast, when responding to the surrogate authorization prompt, the majority (77.5%) described a relational approach when making the decision, to preserve familial harmony and honor their cultural heritage.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eUse of individualistic and relational autonomy frameworks are situational for some individuals. Participants acknowledged the impact of personal, cultural, and societal elements on their decisional approach. The concept of relational autonomy has utility through its versatility in complex decision-making events and by accounting for multiple stakeholders without privileging the autonomy of a single decision-maker over others.\u003c/p\u003e\u003ch2\u003eClinical trial number:\u003c/h2\u003e \u003cp\u003enot applicable\u003c/p\u003e","manuscriptTitle":"Reconsidering Autonomy: Asian Americans’ Use of Relational Autonomy in Organ Donation Decisions","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-10-30 04:47:26","doi":"10.21203/rs.3.rs-5110495/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-10-22T06:36:33+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-10-04T07:19:35+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-10-04T06:45:53+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Medical Ethics","date":"2024-09-18T13:38:14+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-ethics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"meth","sideBox":"Learn more about [BMC Medical Ethics](http://bmcmedethics.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/meth/default.aspx","title":"BMC Medical Ethics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"767ffdab-7197-4032-854e-3bb4918dca9f","owner":[],"postedDate":"October 30th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-04-07T16:03:23+00:00","versionOfRecord":{"articleIdentity":"rs-5110495","link":"https://doi.org/10.1186/s12910-025-01206-4","journal":{"identity":"bmc-medical-ethics","isVorOnly":false,"title":"BMC Medical Ethics"},"publishedOn":"2025-04-02 15:57:16","publishedOnDateReadable":"April 2nd, 2025"},"versionCreatedAt":"2024-10-30 04:47:26","video":"","vorDoi":"10.1186/s12910-025-01206-4","vorDoiUrl":"https://doi.org/10.1186/s12910-025-01206-4","workflowStages":[]},"version":"v1","identity":"rs-5110495","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5110495","identity":"rs-5110495","version":["v1"]},"buildId":"FbvkV6FR0MCFSLy54lSbu","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}