‘Goodness of Fit Ethics’ to Promote Health Research for LGBT Youth

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This past November, Public Responsibility in Medicine and Research (PRIM&R), a non-profit organization dedicated to the study and advancement of the highest ethical standards in the conduct of research, held its annual Advancing Ethical Research (AER) Conference featuring Dr. Celia B. Fisher, Director of the Center for Ethics Education and HIV and Drug Abuse Prevention Research Ethics Training Institute at Fordham University. She, along with Janet L. Brody, PhD and Eric Kodish, MD, were panelists on Panel III: Research With Children and Adolescents: Who and How Is the Decision Made to Participate?

Discussing her NIH-funded research on ethical issues in research involving LGBT youth, Dr. Fisher discussed the “interfamilial, regulatory and ethical tensions” that emerge in HIV prevention studies striving to recruit sexual and gender minority adolescents under 18 years of age.

Dr. Fisher discussed the requirement of parental permission for at-risk adolescents to enroll in HIV research and how it, contrary to the assumption that it protects participants, results in low enrollment as adolescents may not wish to share their sexual orientation with their families. Furthermore, she added that the need for parental permission both reduces participation and creates ethical issues as an entire population may now have limited or no access to a potential treatment for HIV.

According to Seth Hall of the PRIM&R blog, Dr. Fisher’s solution was to apply her “goodness of fit ethics” in order to reconsider the adolescents’ characterization as a vulnerable, based on the strengths and weaknesses of this particular population. Dr. Fisher and her colleagues found that potential adolescent participants “sufficiently understood relevant aspects of research, such as random assignment, side effects, and privacy risks, to support their informed consent without the need for parental permission.” Additionally, she argued that a waiver of parental/ legally authorized representatives (LAR) permission (45 CFR 46.408(c)) should be included in consent processes which are “appropriate to the development and informational needs of the participants” to promote adolescent enrollment in HIV and drug use research.

Please visit PRIM&R’s blog, Ampersand, for full coverage of the panel in the post titled, “Assent, Consent, and Goodness of Fit.”

Celia B. Fisher, Ph.D. is the Fordham University Marie Ward Doty University Chair in Ethics and Director of the Center for Ethics Education. Fisher’s  Decoding the Ethics Code: A Practical Guide for Psychologist, is now in its fourth edition from Sage Publications.

 

Ethics & Society Newsfeed: October 14, 2016

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Health Care and Bioethics

DNA database highlights need for new medical privacy protections
Creation of a national repository of genetic information is seen by some as crucial to reducing medical costs and improving people’s healthcare.

‘Big data’ could mean big problems for people’s healthcare privacy
Public and private insurers are spending millions of dollars on systems that can predict people’s future healthcare needs.

Colorado Wrestles With Ethics Of Aid In Dying As Vote Looms
Colorado man says he would like the option to end his life rather than face a painful death and advocates for Colorado’s Proposition 106  or “death with dignity.”

The NIH needs to review the ethics of research on primates
Congress asked the National Institutes of Health to review “its ethical policies and processes” on nonhuman primate research “to ensure it has appropriate justification for animal research protocols.”

Breast Cancer Death Rates Are Down, But Racial Disparities Persist
Women are less likely to die of breast cancer than they were a decade ago, but not all women are benefiting from that trend.

Continue reading “Ethics & Society Newsfeed: October 14, 2016”

Medical Training for Transgender Patients Needs to Include Sensitivity to Social Stigmas for both Gender and Sexual Orientation

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The recently published article on doctor’s lack of expertise in treating transgender patients in The Guardian is an important step forward in highlighting current disparities in healthcare services for this population.  The study, based on interviews with sample of 23 physicians and psychologists who chose to work with transgender patients, focused on current challenges in providing gender affirming care for individuals who are seeking medically supported transitioning treatments, such as hormonal replacement therapies (HRT).

A recently completed study by Celia B. Fisher, Ph.D. and her colleagues, funded by the National Institute for Minority Health and Health Disparities (NIMHD) confirms the need for greater medical training, based on the reports of 228 transgender males, females and gender non-conforming youth ages 14 – 21.  “Fear of stigmatization is a significant barrier to healthcare among these youth,” notes Fisher, Director of Fordham University’s Center for Ethics Education, “and in our study, 51% reported they did not discuss their transgender identity with their primary health care providers out of fear that the provider would not be accepting.”

Continue reading “Medical Training for Transgender Patients Needs to Include Sensitivity to Social Stigmas for both Gender and Sexual Orientation”

Fordham RETI Fellow Addresses Stigma for HIV-Positive Gay and Bisexual Men

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Dr. Jonathon Rendina, Hunter College, CUNY

The minority stress theory suggests that health disparities experienced by gay and bisexual men (GBM) and other sexual minorities can be explained in terms of stigma-related stressors such as discrimination at work, school, religious institutions, communities and families. The unique stressors of an HIV-positive status experienced by GBM, however, has been overlooked within research on minority stress.

Fordham University Center for Ethics Education HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) Fellow Dr. Jon Rendina, an Assistant Professor in the Department of Psychology and Faculty Investigator and Director of Quantitative Methods at The Center for HIV Educational Studies & Training (CHEST) of Hunter College, CUNY, recently addressed this issue within a paper published in Annals of Behavioral Medicine.

Dr. Rendina has been conducting HIV research with GBM for more than ten years. He explained the need to thoroughly test “the role of internalized stigma about sexual orientation, or internalized homophobia, and internalized HIV stigma within a unified model to see whether one or both have an impact on HIV-positive gay or bisexual men.” Although it is already established that GBM are negatively impacted by internalized sexual minority stigma, the purpose of this study was to further explore the impact of HIV-related stressors on the health of GBM.

Continue reading “Fordham RETI Fellow Addresses Stigma for HIV-Positive Gay and Bisexual Men”

Will Research on 10,000 New Yorkers Fuel Future Racial Health Inequality?

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By Celia B. Fisher, Ph.D.

A 20-year, multi-million dollar study of more than 10,000 New Yorkers scheduled to begin next year claims that it will enable the development of theories, therapeutics, and policies to improve the health and quality of human life.  Although still in the planning stages, the breadth of the data collection proposed (including health habits, biological data, and geospatial mapping) combined with the lack of detail accompanying such a widespread publicity effort raises questions regarding the extent to which the research risks of such an endeavor have been well thought out.

Continue reading “Will Research on 10,000 New Yorkers Fuel Future Racial Health Inequality?”

Its not just mental health studies: Doctors rarely ask adolescent patients about their sexual orientation & LGBT youth are afraid of bias

A recent report underscores the paucity of mental health research relevant to LGBT patients.  According to Celia B. Fisher, Ph.D., Director of the Fordham University Center for Ethics Education this unfortunate situation is not unique to research studies.

Continue reading “Its not just mental health studies: Doctors rarely ask adolescent patients about their sexual orientation & LGBT youth are afraid of bias”

Best intentions, worst outcomes: Ethical and legal challenges for international research involving sex workers

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Central America hosts a thriving sex work industry that is a key source and transit region for sex trafficking and undocumented migrants engaged in sex work. Sex workers – particularly those who are migrant – are at high risk for HIV and other sexually transmitted infections as well as physical abuse and in some cases murder. However, the existing network of international, national, and local criminal and human rights policies applicable to sex workers can be confusing and contradictory, not only in the context of access to sexual health preventions and interventions, but also for investigators seeking to conduct that can lead to effective sexual health services.

Continue reading “Best intentions, worst outcomes: Ethical and legal challenges for international research involving sex workers”