‘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: September 30, 2016

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Technology and Ethics

Tech Giants Team Up To Tackle The Ethics Of Artificial Intelligence
The Partnership on Artificial Intelligence to Benefit People and Society, consisting of Amazon, Facebook, Google, Microsoft and IBM (with Apple in talks to join), weighs in on the missing ethics standards in artificial intelligence.

Fourth Industrial Revolution: With robots, is a life without work one we’d want to live?
“Being gainfully employed is about more than money. We need to consider what will give our lives purpose and connection in the age of automation.”

Should we bring extinct species back from the dead?
New advances in genetic engineering have researchers thinking seriously about de-extinction and which animals we might be able to bring back.

Bioethics and Public Health

Birth of Baby with Three Parents’ DNA Marks Success for Banned Technique
Experts discuss the first successful mitochondrial donation procedure and why the term “three-parent baby” is misleading.

Human Chimera Research’s Huge (and Thorny) Potential
The National Institutes of Health (NIH) reversed policy barring funding from research involving human chimeras (mixtures of human cells with animal embryos) which can yield major human development discoveries.

Ethics review identifies top two challenges for genome editing
The Nuffield Council on Bioethics reports a need for urgent ethical scrutiny on new genome editing techniques.

Bioethics in the Election: Where the Candidates Stand
The major presidential candidates’ positions on bioethics-related issues in The Hastings Center’s interactive chart.

Continue reading “Ethics & Society Newsfeed: September 30, 2016”

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”

RETI Fellow Examines Intersectional Stigma for HIV-Positive African American Women

Dr. Faith Fletcher, University of Illinois at Chicago

While bearing the disproportionate burden of HIV/AIDs in the US, African American women also face multi-level stigma at social, community and institutional levels, which is exacerbated by their HIV-positive status.

Fordham University Center for Ethics Education HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) fellow Dr. Faith E. Fletcher, an Assistant Professor in Community Health Sciences at the University of Illinois at Chicago, recently addressed this issue using her dissertation research in an article titled, “She Told Them, Oh That Bitch Got AIDS”: Experiences of Multi-Level HIV/AIDS- Related Stigma among African American Women Living with HIV/AIDS in the South” published in AIDS Patient Care and STDs.

Dr. Fletcher interviewed 42 African American women with HIV/AIDS living in South Carolina. She found that “HIV/AIDS stigma permeated many dimensions of women’s lives, including the research process.” Using narrative data and the Social Ecological Model, Dr. Fletcher’s findings demonstrate the need for an enhanced understanding of multi-level stigma experienced by HIV-positive African American women to inform innovative and tailored approaches.“Settings that are generally regarded as safe spaces for most individuals are not necessarily safe for HIV-positive African American women due to the intersections of stigma in places where women “live, work, love, play, and pray,” Dr. Fletcher explained.

Although many women in the study identified their homes as safe spaces to complete interviews, several participants completed interviews in Dr. Fletcher’s car to enhance privacy. Dr. Fletcher contends “ethical challenges in the research process emanating from additive, layered stigma can limit the availability of invulnerable research spaces.”  Dr. Fletcher shared that her research and training at RETI has offered her a strong foundation to identify and address ethical issues that may arise while engaging communities in the HIV research process.

Please click here for more information on the Fordham University HIV Prevention Research Ethics Training Institute (RETI).

Citation: Fletcher FE, Annang L, Kerr J, Buchberg M, Bogdan-Lovis L, Philpott-Jones S. “She Told Them, Oh That Bitch Got AIDS”: Experiences of Multi-Level HIV/AIDS- Related Stigma among African American Women Living with HIV/AIDS in the South. AIDS Patient Care and STDs. 2016 Jul;30(7):349-56. doi: 10.1089/apc.2016.0026. PMID:27410498.

Ethics & Society Newsfeed: April 8, 2016

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Can we trust robots to make moral decisions?
Last week, Microsoft inadvertently revealed the difficulty of creating moral robots.

Why Bioethics Has a Race Problem
Moral imagination in bioethics has largely failed African Americans.

The disturbing reason some African American patients may be undertreated for pain
African Americans are routinely under-treated for their pain compared with whites, according to research.

Continue reading “Ethics & Society Newsfeed: April 8, 2016”

Ethics & Society Newsfeed: January 22, 2016

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Record 30,000 Organ Transplants Performed Last Year
Doctors attribute the 5% increase in donations in 2015 to Americans’ growing willingness to donate organs.

Why We Need to Rethink HIV Attitudes
Robert Klitzman argues it is time to re-examine attitudes and laws criminalizing potential HIV exposure.

Advancing Medical Professionalism in US Military Detainee Treatment
A bioethical argument that current medical ethics standards provide a sound basis for military medical practice, even in situations where military missions must be reconciled with patient needs.

Continue reading “Ethics & Society Newsfeed: January 22, 2016”

Fordham RETI Fellows Present at PRIM&R Annual Meeting

Dr. Erin Bonar, Dr. Faith Fletcher, and Dr. Celia B. Fisher at the PRIM&R Annual Meeting 2015. Photo courtesy Sue Fish
Dr. Erin Bonar, Dr. Faith Fletcher, and Dr. Celia B. Fisher at the PRIM&R Annual Meeting 2015. Photo courtesy Dr. Sue Fish

The Fordham HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) was well-represented at the Public Responsibility in Medicine and Research (PRIM&R) Annual Meeting in Boston, November 12-15, with faculty and fellows presenting on their institute-funded research.

Continue reading “Fordham RETI Fellows Present at PRIM&R Annual Meeting”