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HIV Rates Are Increasing in Gay/Bisexual Teens

IRB Barriers to Research Must Be Resolved to Bend the Curve
      Federal regulations (45 CFR 46) created IRBs to protect the rights and welfare of human research participants. Like overprotective parents whose short-term precautions have the unintended long-term consequence of depriving their children of the opportunity to develop skills necessary to be independent adults, IRBs are complicit in the creation of health inequities when their disapproval of studies systematically prevent some communities from having the opportunity to receive the benefits of research. When health inequities are produced, even in part, by scientific inequities created through a system chartered to protect human well-being, the imbalance must be called to account. Against the backdrop of recent developments in proposed revision to the Common Rule that governs IRB policies and new scientific opportunities to create an HIV/AIDS-free generation, this article recounts how the highest-risk group in the U.S. has been too often left behind, and the role IRBs have played in enacting these disparities.
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      References

      1. White House Office of National AIDS Policy. National HIV/AIDS strategy for the United States: updated to 2020. https://aids.gov/federal-resources/national-hiv-aids-strategy/nhas-update.pdf. Published 2015. Accessed September 15, 2015.

        • CDC
        Diagnoses of HIV Infection in the United States and Dependent Areas, 2013.
        CDC, Atlanta, GA2015
        • Mustanski B.
        • Newcomb M.
        • Du Bois S.N.
        • Garcia S.C.
        • Grov C.
        HIV in young men who have sex with men: a review of epidemiology, risk and protective factors, and interventions.
        J Sex Res. 2011; 48: 218-253https://doi.org/10.1080/00224499.2011.558645
        • CDC
        Compendium of Evidence-Based Interventions and Best Practices for HIV Prevention.
        CDC, Atlanta, GA2015
        • Moore Q.L.
        • Paul M.E.
        • McGuire A.L.
        • Majumder M.A.
        Legal barriers to adolescent participation in research about HIV and other sexually transmitted infections.
        Am J Public Health. 2016; 106: 40-44https://doi.org/10.2105/AJPH.2015.302940
        • Hill B.J.
        Medical decision making by and on behalf of adolescents: reconsidering first principles.
        J. Health Care Law Policy. 2012; 15: 37-73
        • Pettifor A.
        • Nguyen N.L.
        • Celum C.
        • Cowan F.M.
        • Go V.
        • Hightow-Weidman L.
        Tailored combination prevention packages and PrEP for young key populations.
        J Int AIDS Soc. 2015; 18(2): 19434https://doi.org/10.7448/IAS.18.2.19434
        • Rudy B.J.
        • Kapogiannis B.G.
        • Lally M.A.
        • et al.
        Youth-specific considerations in the development of preexposure prophylaxis, microbicide, and vaccine research trials.
        J Acquir Immune Defic Syndr. 2010; 54: S31-S42https://doi.org/10.1097/QAI.0b013e3181e3a922
      2. New York State Department of Health. 2015 Blueprint for achieving the goal set forth by Governor Cuomo to end the epidemic in New York State by the end of 2020. Published March 30, 2015. www.health.ny.gov/diseases/aids/ending_the_epidemic/docs/blueprint.pdf. Accessed March 7, 2016.

        • Mustanski B.
        Ethical and regulatory issues with conducting sexuality research with LGBT adolescents: a call to action for a scientifically informed approach.
        Arch Sex Behav. 2011; 40: 673-686https://doi.org/10.1007/s10508-011-9745-1
        • Fisher C.B.
        • Arbeit M.R.
        • Dumont M.S.
        • Macapagal K.
        • Mustanski B.
        Self-consent for HIV prevention research involving sexual and gender minority youth: reducing barriers through evidence-based ethics.
        J Empirical Res Human Res Ethics. 2016; 11: 1-12
        • Fisher C.B.
        • Mustanski B.
        Reducing health disparities and enhancing the responsible conduct of research involving LGBT youth.
        Hastings Cent Rep. 2014; 44: S28-S31https://doi.org/10.1002/hast.367
        • Gilbert A.L.
        • Knopf A.S.
        • Fortenberry J.D.
        • Hosek S.G.
        • Kapogiannis B.G.
        • Zimet G.D.
        Adolescent self-consent for biomedical human immunodeficiency virus prevention research.
        J Adolesc Health. 2015; 57: 113-119https://doi.org/10.1016/j.jadohealth.2015.03.017
      3. Secretary’s Advisory Committee for Human Research Protections. Meeting presentations and reports (April 18–19; November 1). 2005. www.hhs.gov/ohrp/archive/sachrp/mtgings/mtg04-05/mtg04-05.htm. Accessed March 20, 2015.

        • Steinberg L.
        Does recent research on adolescent brain development inform the mature minor doctrine?.
        J Med Philos. 2013; 38: 256-267https://doi.org/10.1093/jmp/jht017
        • Flicker S.
        • Guta A.
        Ethical approaches to adolescent participation in sexual health research.
        J Adolesc Health. 2008; 42: 3-10https://doi.org/10.1016/j.jadohealth.2007.07.017
        • Fisher C.B.
        Enhancing the responsible conduct of sexual health prevention research across global and local contexts: training for evidence-based research ethics.
        Ethics Behav. 2015; 25: 1-10https://doi.org/10.1080/10508422.2014.948956