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Peer-reviewedCC BY-NC-NDBehavioral medicine (Washington, D.C.)

From Collection to Collaboration: Building Ethical Frameworks for Genetic Research.

  • Devin A Madden1
  • Emerson Dusic2
  • Isabella E Rios2
  • Kimberly Zayhowski3
  • L Jude Tantay4
  • Nasa Sinnott-Armstrong5,6
  • Rodrigo Aguayo-Romero7
  • Sima Rabinowitz1
  • Michelle A Ramos1
  • Kellan Baker8,9
  • Sari L Reisner2
  • Carol R Horowitz1
9 affiliations
  1. 1Department of Population Health Science and Policy, Institute for Health Equity Research, Icahn School of Medicine at Mount Sinai.
  2. 2Department of Epidemiology, University of Michigan School of Public Health.
  3. 3Medical Sciences and Education, Boston University Chobanian and Avedisian School of Medicine.
  4. 4L. Tantay Consulting.
  5. 5Public Health Sciences Division, Fred Hutchinson Cancer Center.
  6. 6Department of Genome Sciences, University of Washington.
  7. 7Institute for Health Research & Policy at Whitman-Walker.
  8. 8Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health.
  9. 9Movement Advancement Project.
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Abstract

Transgender, nonbinary, and gender diverse (TNGD) communities are not routinely included as partners in the research that will impact them. The expansion of genomic and gender identity data collection has allowed researchers to explore transgender identity genomics research (TIGR), or associations between genomics and gender identity. We used a community-based participatory research (CBPR) approach to explore TNGD perspectives on TIGR in order to advance ethical practices, minimize harms, and maximize potential benefits. An Executive Stakeholder Board of TNGD community members, advocates, clinicians, and ethics, legal, genomics, and health equity scholars co-developed recruitment strategies, data collection tools, analytic strategies, and a dissemination plan which informed qualitative interviews with 31 U.S.-based TNGD adults. The mean age was 34 years (range = 19-73). Twelve participants were nonbinary, 12 were trans women, and 7 were trans men. The majority (61%) were people of color. Using reflexive thematic analysis, we conceptualized four themes related to ethical TIGR research practices: 1) Are we represented? 2) Are we protected? 3) Are we benefiting? 4) Are we understood? Findings underscore the importance of conducting any TIGR or genomics research with and not on TNGD communities. Ethical research benefits from sustained partnership, transparency, and reflexivity, particularly amidst ideologically motivated threats to inclusive science. Centering TNGD voices in, and recommendations for, genomics strengthens both scientific rigor and community trust. The incongruity of attempting to interrupt a CBPR study focused on ethical research practices in TIGR underscores the contradiction between stated federal commitments to research integrity and the actions taken. (4,064 words).

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Cite

BibTeXRIS
BibTeX
@article{madden2026from,
  title = {{From Collection to Collaboration: Building Ethical Frameworks for Genetic Research.}},
  author = {Devin A Madden and Emerson Dusic and Isabella E Rios and Kimberly Zayhowski and L Jude Tantay and Nasa Sinnott-Armstrong and Rodrigo Aguayo-Romero and Sima Rabinowitz and Michelle A Ramos and Kellan Baker and Sari L Reisner and Carol R Horowitz},
  journal = {Behavioral medicine (Washington, D.C.)},
  year = {2026},
  month = jul,
  doi = {10.1080/08964289.2026.2633346},
  url = {https://europepmc.org/article/MED/42904423},
  note = {CC BY-NC-ND},
}
RIS
TY  - JOUR
TI  - From Collection to Collaboration: Building Ethical Frameworks for Genetic Research.
AU  - Devin A Madden
AU  - Emerson Dusic
AU  - Isabella E Rios
AU  - Kimberly Zayhowski
AU  - L Jude Tantay
AU  - Nasa Sinnott-Armstrong
AU  - Rodrigo Aguayo-Romero
AU  - Sima Rabinowitz
AU  - Michelle A Ramos
AU  - Kellan Baker
AU  - Sari L Reisner
AU  - Carol R Horowitz
PY  - 2026
DA  - 2026/07/01
JO  - Behavioral medicine (Washington, D.C.)
DO  - 10.1080/08964289.2026.2633346
UR  - https://europepmc.org/article/MED/42904423
AB  - Transgender, nonbinary, and gender diverse (TNGD) communities are not routinely included as partners in the research that will impact them. The expansion of genomic and gender identity data collection has allowed researchers to explore transgender identity genomics research (TIGR), or associations between genomics and gender identity. We used a community-based participatory research (CBPR) approach to explore TNGD perspectives on TIGR in order to advance ethical practices, minimize harms, and maximize potential benefits. An Executive Stakeholder Board of TNGD community members, advocates, clinicians, and ethics, legal, genomics, and health equity scholars co-developed recruitment strategies, data collection tools, analytic strategies, and a dissemination plan which informed qualitative interviews with 31 U.S.-based TNGD adults. The mean age was 34 years (range = 19-73). Twelve participants were nonbinary, 12 were trans women, and 7 were trans men. The majority (61%) were people of color. Using reflexive thematic analysis, we conceptualized four themes related to ethical TIGR research practices: 1) Are we represented? 2) Are we protected? 3) Are we benefiting? 4) Are we understood? Findings underscore the importance of conducting any TIGR or genomics research with and not on TNGD communities. Ethical research benefits from sustained partnership, transparency, and reflexivity, particularly amidst ideologically motivated threats to inclusive science. Centering TNGD voices in, and recommendations for, genomics strengthens both scientific rigor and community trust. The incongruity of attempting to interrupt a CBPR study focused on ethical research practices in TIGR underscores the contradiction between stated federal commitments to research integrity and the actions taken. (4,064 words).
SN  - 0896-4289
SN  - 1940-4026
ER  -