ArticleBehavioral medicine (Washington, D.C.)
From Collection to Collaboration: Building Ethical Frameworks for Genetic Research.
Article in Behavioral medicine (Washington, D.C.). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
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Authors and funding
12 authors.
Funding
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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.