NIH Recognizes need to address intersex human rights and other community priorities in research
interACT is making an impact by helping to set better priorities and better standards for federally funded intersex research.
We were delighted and encouraged to see the latest update from NIH (National Institutes of Health) regarding their medical research priorities for intersex, which is included in their plan for better research on the health of SGM (sexual and gender minorities) populations. NIH requested feedback and guidance on their Strategic Plan to Advance Research on the Health and Well-being of SGM in November 2015. InterACT submitted our comments, and two of our Board Members (Arlene Baratz and Karen Walsh) also submitted personal responses. On June 13, 2016, NIH released their Summary of Public Comments about their Plan.
Included in the section on intersex health were our top 6 priorities for improving clinical care, which came from our community survey. Also included were all 7 critical gaps in the current research that we had identified. And, for the first time to our knowledge, the NIH acknowledged the need to address intersex human rights in research!
Taken together, the NIH section on intersex priorities and research gaps included (quoted directly from the document):
- Long-term prospective and retrospective studies of sexual and reproductive function and quality of life in relation to early medical, surgical, and psychosocial factors.
- Mining new supplemental data sources that are emerging, which give narrative retrospective accounts of care and outcomes.
- Health outcomes research looking at children with atypical genitals who did not have early genital surgery.
- Research on the true incidence of tumors in children and adults with DSD.
- Improve clinical management of DSD over the life course.
- Literature reviews and analysis of existing research, including review by disinterested researchers.
- Psychological support for affected children and youth.
- Psychological support for parents and families.
- The impact of peer support on children with DSD and their families.
- Eliminate unnecessary genital/gonadal surgery.
- Offer families strategies or support for delaying gender assignment until child can participate in the decision.
- Increase psychosocial support for patients and families.
- Increase children’s opportunities to participate in decisions about their care.
- Refer or increase patient/peer and family access to support groups.
- Eliminate unnecessary genital exams and photography.
Additionally, the NIH acknowledged the need for narrative analysis of the stories of affected individuals, and for community-based participatory research (CBPR) in collaboration with trusted groups. They further acknowledged that the affected individual (not just doctors and parents) is the primary stakeholder, and must be better represented in research priorities and the prevailing standard of care.
This is an excellent start and we look forward to more collaboration on good federally funded research from the NIH that meets the needs of the community. We appreciate that they are listening to the primary stakeholders, and we hope our allies in the research community are listening as well!