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Published on: November 19, 2013
Perceptions of and willingness to participate in genomics research among a U.S. sample
Emerson Dusic1,2, Devin Madden3, Isabella E Rios1,2
1Department of Epidemiology, University of Michigan School of Public Health, Ann Arbor, MI, United States.
Introduction:
The proliferation of biobanks and the collection of gender identity data have created opportunities to conduct transgender identity genetic research (TIGR), which explores possible genetic contributions to gender identity. However, without meaningfully engaging trans communities, researchers may struggle to understand and prevent potential harms while maximizing potential benefits, particularly when research fails to incorporate the social, medical, and political factors and environments shaping transgender peoples' lives. This study explored factors associated with transgender individuals' perspectives on and willingness to participate in TIGR.
Methods:
Between January and May 2025, we recruited a nationwide sample (n = 495) of transgender adults. Participants completed a cross-sectional survey assessing sociodemographics, policy safety, health, TIGR perspectives, and willingness to participate in TIGR. Regression models assessed correlates of TIGR perspectives and willingness to participate.
Results:
Participants' median age was 29 years (IQR = 25-34); 38.4% were people of color. While 62.2% would be willing to participate, 68.9% agreed TIGR could harm transgender communities. More positive TIGR perspectives were observed among people of color (aβ = 0.48, 95% CI = 0.18 to 0.56) and those experiencing food insecurity (aβ = 0.21, 95% CI = 0.02 to 0.40). Less favorable perspectives were associated with disability (aβ = -0.20, 95% CI = -0.38 to -0.02), medical gender affirmation (aβ = -0.30, 95% CI = -0.54 to -0.06), mixed vs. negative transgender policy environment (aβ = -0.32, 95% CI = -0.59 to -0.05), and high medical mistrust (aβ = -0.24, 95% CI = -0.46 to -0.03). Positive perspectives were strongly associated with willingness to participate in TIGR (aOR = 14.48, 95% CI = 7.30 to 28.70).
Discussion:
Although most participants were willing to participate in TIGR, a substantial minority were unsure or unwilling, reflecting concerns about trust, risk, and benefits. Future genomics research involving transgender people must prioritize trust-building efforts, particularly those that ensure participant safety, to encourage future research participation.
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