interACT Policy Statement on Participation in Research

Updated by interACT February 2, 2023

interACT: Advocates for Intersex Youth recognizes the value of high-quality, ethically conducted research as one avenue to improve the recognized disparities the intersex community faces in health-related outcomes and other areas of life.[1] Accordingly, interACT is committed to supporting research that measures what matters to people with innate variations in their sex characteristics (also known as intersex traits) and that meaningfully contributes to an understanding of their experiences and needs.

Historically as well as currently, the majority of the published medical research focusing on variations in sex characteristics has been conducted in ways that harm the community. Much of that research directly involves the performance of medically unnecessary surgeries on children with intersex traits[2] – a practice that interACT and other intersex-led organizations have advocated against domestically and internationally for nearly three decades. In addition to non-consensual surgery, children with variations in their sex characteristics have been subjected to invasive examinations, medical photography, and sexually abusive follow-up testing in the course of “data collection” for these studies.[3] Research that is carried out by medical practitioners who support and engage in these harmful acts is often designed to perpetuate and justify the paradigm of pre-emptive surgical intervention on children with variations in their sex characteristics.[4]Other harmful research has pathologized sexual orientation and gender diversity, seeking to suppress the expression of any non-cisgender, non-heterosexual identity or perceived gender nonconformity by intersex youth,[5] and some studies have even sought to prevent the development of intersex traits before birth altogether.[6]

At the same time, published research has largely neglected topics that are critical to intersex individuals’ well-being, such as the medical needs of intersex adults and intersex mental health in general, which have both been identified as areas requiring further investigation.[7] Furthermore, most studies published thus far have failed to meaningfully incorporate input from intersex individuals or from clinicians identified by intersex support or advocacy groups as allies. 

Understanding the role that research has played – and continues to play – in the legacy of medicalized abuse against intersex individuals, it is interACT’s official policy that the organization will only support research efforts that adequately address the particular ethical concerns of the intersex community, especially in the context of research involving children and youth. At a minimum, studies must meet the highest standards of informed consent (and informed assent for children); respect the autonomy, dignity, and privacy of intersex participants and (where applicable) their families; avoid subjecting participants to unnecessary risks; and responsibly address questions relevant to the well-being of individuals with variations in their sex characteristics. Throughout the entire duration of a project, it is essential for researchers to be trauma-informed[8] and to demonstrate respect for individuals’ self-determination, including with regard to the preservation of one’s ability to lead their own medical decision-making. 

Clinicians and researchers intending to undertake intersex-focused research are encouraged to involve interACT as early in the process as possible, well before approval is sought from institutional review boards (IRBs). From experience, interACT is most effective in supporting research when the organization is involved from a project’s inception, allowing the opportunity to provide input on the research design, its methods and goals, and sensitive and accurate use of language in any recruitment materials or survey instruments. A robust process of community-based participatory research (CBPR) is ideal,[9] in which intersex advocates and community members, affirming clinicians, and researchers collaborate on a study’s design and execution; where appropriate, co-authorship should be considered. 

To initiate an inquiry, prospective researchers may submit a one- to two-page project proposal to [email protected] for consideration by interACT staff. We look forward to collaborating with research partners to begin to fill gaps in published data on intersex individuals’ experiences and needs.

[1]

Amy Rosenwohl-Mack et al (2020), “A National Study on the Physical and Mental Health of Intersex Adults in the U.S.,” PLoS One 15(10): e0240088; Caroline Medina and Lindsay Mahowald (2021), “Key Issues Facing People With Intersex Traits,” Center for American Progress, https://www.americanprogress.org/article/key-issues-facing-people-intersex-traits/.

[2]

See, e.g., Christopher J. Long et al (2021), “Post-operative Complications Following Masculinizing Genitoplasty in Moderate to Severe Genital Atypia: Results From a Multicenter, Observational Prospective Cohort Study,” Journal of Pediatric Urology 17(3): 379; Natalie J. Nokoff et al (2017), “Prospective Assessment of Cosmesis Before and After Genital Surgery,” Journal of Pediatric Urology 13: 28.e1; Cortney Wolfe-Christensen et al (2017), “Changes in Levels of Parental Distress After Their Child With Atypical Genitalia Undergoes Genitoplasty,” Journal of Pediatric Urology 13: 32.e1; J.M. Hutson et al (1991), “Girth-reduction Clitoroplasty – A New Technique: Experience With 37 Patients,” Pediatric Surgery International 6: 336; Patricia K. Donahoe and W. Hardy Hendren III (1984), “Perineal Reconstruction in Ambiguous Genitalia Infants Raised as Females,” Annals of Surgery 200(3): 363; Howard W. Jones, Jr. and Lawson Wilkins (1961), “Gynecological Operations in 94 Patients With Intersexuality,” American Journal of Obstetrics & Gynecology 82(5): 1142.

[3]

See Jennifer Yang, Diane Felsen, and Dix P. Poppas (2007), “Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability,” Journal of Urology 178: 1598; Valeska Bidault et al (2021), “New Method for Early Evaluation of Clitoris Innervation Using Clitoro-Perineal Reflex After Feminizing Genitoplasty in Early Childhood: A Pilot-study,” Scientific Reports 11(1): 7087.

[4]

Arlene B. Baratz and Ellen K. Feder (2015), “Misrepresentation of Evidence Favoring Early Normalizing Surgery for Atypical Sex Anatomies,” Archives of Sexual Behavior 44(7): 1761. See, e.g., Heino F.L. Meyer-Bahlburg et al (2004), “Attitudes of Adult 46,XY Intersex Persons to Clinical Management Policies,” Journal of Urology 171(4): 1615; A. Binet et al (2016), “Should We Question Early Feminizing Genitoplasty for Patients With Congenital Adrenal Hyperplasia and XX Karyotype?” Journal of Pediatric Surgery 51: 465; Konrad M. Szymanski et al (2019), “Validation and Preliminary Results of the Parental Assessment of Children’s External Genitalia Scale for Females (PACE-F) for Girls With Congenital Adrenal Hyperplasia,” Journal of Urology 130: 132.

[5]

Hertha Richter-Appelt and Benjamin Gedrose (2005), “Gender Identity and Recalled Gender Related Childhood Play Behavior in Individuals With Different Forms of Intersexuality,” Anthropologischer Anzeiger 63(3): 241; Janet Chuang et al (2013), “Complexities of Gender Assignment in 17B-hydroxysteroid Dehydrogenase Type 3 Deficiency: Is There a Role for Early Orchiectomy?” International Journal of Pediatric Endocrinology 2013: 15; Chiara Simeoli et al (2022), “Severe Impact of Late Diagnosis of Congenital Adrenal Hyperplasia on Gender Identity, Sexual Orientation and Function: Case Report and Review of the Literature,” Frontiers in Genetics 13: 902844.</5>

[6]

Maria I. New et al (2001), “Prenatal Diagnosis for Congenital Adrenal Hyperplasia in 532 Pregnancies,” Journal of Clinical Endocrinology & Metabolism 86(12): 5651; Barbara I. Cerame et al (1999), “Prenatal Diagnosis and Treatment of 11B-Hydroxylase Deficiency Congenital Adrenal Hyperplasia Resulting in Normal Female Genitalia,” Journal of Clinical Endocrinology & Metabolism 84(9): 3129; Gillian Ormond et al (2009), “Endocrine Disruptors in the Workplace, Hair Spray, Folate Supplementation, and Risk of Hypospadias: Case-Control Study,” Environmental Health Perspectives 117(2): 303.

[7]

National Academies of Sciences, Engineering, and Medicine (2020), Understanding the Well-Being of LGBTQI+ Populations, Washington, DC: The National Academies Press, https://nap.nationalacademies.org/catalog/25877/understanding-the-well-being-of-lgbtqi-populations; Katharine B. Dalke, Arlene B. Baratz, and Julie A. Greenberg (2020), “Protecting Children with Intersex Traits: Legal, Ethical, and Human Rights Considerations,” in The Plasticity of Sex, ed. Maria Legato, Elsevier; Frances Grimstad et al (2021), “The Health Care of Adults with Differences in Sex Development or Intersex Traits Is Changing: Time to Prepare Clinicians and Health Systems,” LGBT Health 8(7): 439.

[8]

See Substance Abuse and Mental Health Services Administration (2014), SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach, HHS Publication No. (SMA) 14-4884, Rockville, MD: Substance Abuse and Mental Health Services Administration.

[9]

See Sabra L. Katz-Wise et al (2018), “Lessons from a Community-Based Participatory Research Study with Transgender and Gender Nonconforming Youth and their Families,” Action Research 17(2): 186; The Four Corners: TNB Health Research Advisory Network (2022), A Best Practice Research Guide for Community-Based Participatory Research (CBPR) in Transgender and Nonbinary (TNB) Health, https://howardbrown.org/wp-content/uploads/2022/02/HBH_FourCorners_BestPractices_FINAL2.pdf.</h5