Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis

Susan A. Treloar, Treloar SA, Katherine I. Morley, Taylor SD, Sandra D Taylor, Sandra Taylor, Wayne D Hall, Wayne Hall
Community genetics · 2007 · vol. 10(2) , pp. 61–71 · doi:10.1159/000099083 · PMID:17380055 · W1969439208
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This pilot study explored motivations for participating in a genetic endometriosis study, finding that participants were generally altruistic, with little concern for privacy and a desire for more personal information about the condition.

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Abstract

OBJECTIVE: This exploratory, pilot study aimed to investigate motivations and reflections of participants who had provided epidemiological information, blood samples and access to clinical records and data in a large genetic epidemiological study of endometriosis, a common multifactorial disorder affecting women. We also aimed to explore understanding of complex genetic or multifactorial conditions in general. METHODS: In-depth interviews were conducted with 16 endometriosis study participants with diverse characteristics. RESULTS: Interviewees generally described their participation in the genetic study using altruistic frameworks of reference. Themes that emerged included unquestioning willingness and consent to participate, little concern about privacy issues, desire for more information from the researchers about the condition rather than scientific progress, the benefits of research participation to family communication, and differing ideas about genetic influences on endometriosis. Specific features of endometriosis also influenced reflections on research participation experience. CONCLUSIONS: As increasing numbers of individuals and families in the community become involved in genetic epidemiological studies of common diseases, more extensive research will be needed to better understand their expectations with a view to improving researchers' communications with study participants.

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Condition tags

endometriosis

MeSH descriptors

Attitude to Health Attitude to Health Endometriosis Epidemiologic Studies Epidemiologic Studies Genetic Predisposition to Disease Motivation Motivation Patient Participation Australia Australia Endometriosis Endometriosis Endometriosis Endometriosis Female Female Genetic Predisposition to Disease Genetic Predisposition to Disease Humans

Citation neighborhood (2-hop)

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. Outer rings show 2-hop neighbours — papers reached through the immediate citers/citees. [ collapse to 1-hop ]

References (47)

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