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

OLYMPUS DIGITAL CAMERA

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.

 

Dr. Celia B. Fisher Examines Whether IRBs Hinder HIV Research with LGBT Youth

Image via
Image via

The dearth of HIV prevention research on LGBT individuals under 18 years of age is at least partially a result of conservative Institutional Review Boards (IRBs), according to new research by Fordham University Center for Ethics Education Director Dr. Celia B. Fisher, and colleague Dr. Brian Mustanski of Northwestern University’s IMPACT Program.

Fisher and Mustanski describe this problem in their article, “HIV Rates Are Increasing in Gay/Bisexual Teens: IRB Barriers to Research Must Be Resolved to Bend the Curve,” to be published by the American Journal of Preventative Medicine.

Continue reading “Dr. Celia B. Fisher Examines Whether IRBs Hinder HIV Research with LGBT Youth”

Dr. Celia B. Fisher Presents Webinar on Ethics in Adolescent HIV Prevention Research: Youth and Parent Perspectives

Screenshot 2015-10-21 12.18.53

For more information, please visit & “like” RELAY: Resources & Education for LGBT & Allied Youth: www.facebook.com/lgbtrelay

On October 14, 2015, Fordham University Center for Ethics Education Director Dr. Celia B. Fisher presented a webinar for the HIV/AIDS Network Coordination (HANC) on youth and parent perspectives on ethics in adolescent HIV prevention research.

Continue reading “Dr. Celia B. Fisher Presents Webinar on Ethics in Adolescent HIV Prevention Research: Youth and Parent Perspectives”

Fit to a “T”: Addressing the Unique Needs of Transgender Students

transclassroom_trans

For more information, please visit & “like” RELAY: Resources & Education for LGBT & Allied Youth: www.facebook.com/lgbtrelay

On Monday, August 3, several organizations, including the Human Rights Campaign, the National Education Association, and the American Civil Liberties Union released “Schools in Transition: A Guide for Supporting Transgender Students in K-12 Schools.” The report, which addresses issues such as names and pronouns, dress codes, and puberty and medical transition “represents an important milestone in reducing health disparities among transgender youth, something that we are also working toward at the Fordham University Center for Ethics Education,” stated Dr. Celia Fisher, Center Director.

Continue reading “Fit to a “T”: Addressing the Unique Needs of Transgender Students”

Fordham RETI Fellows Publish in Ethics & Behavior Special Issue

E&B cover

Six Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) fellows recently published articles in a special issue of the most recent issue of Ethics & Behavior. The special issue – guest edited by RETI and Fordham University Center for Ethics Education Director Dr. Celia B. Fisher – highlights ethical issues in the responsible conduct of HIV research.

Continue reading “Fordham RETI Fellows Publish in Ethics & Behavior Special Issue”

Fordham RETI Santander Universities Fellow Tackles HIV Prevention in India through Research & Clinical Practice

Arun_Photo1
Dr. Arunansu Talukdar

Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) Fellow Dr. Arunansu Talukdar is not just conducting research on HIV prevention – as a physician, he is practicing it as well.

Talukdar is a member of the fourth cohort of RETI fellows, and was the 2014 recipient of the Fordham University Center for Ethics Education / Santander Universities International Scholarship, which covers the cost of his travel to Fordham for two consecutive summer training institutes, as well as the cost of his mentored research project (MRP). His MRP examines voluntariness of consent to research involving women participating at a clinic-based HIV intervention trial in Kolkata, India.

Continue reading “Fordham RETI Santander Universities Fellow Tackles HIV Prevention in India through Research & Clinical Practice”

Fordham’s Dr. Celia B. Fisher weighs in on failed HIV prevention trial in Africa

Image via http://thinkprogress.org/health/2013/01/04/1398631/hiv-vaccine-breakthrough/
Image via http://thinkprogress.org/health/2013/01/04/1398631/hiv-vaccine-breakthrough/

A recent failed HIV prevention drug trial in Africa has raised concerns over the ethical design and implementation of research involving payment to participants in poor countries.

According to the New York Times: “The trial — known by the acronym Voice, for Vaginal and Oral Interventions to Control the Epidemic — was abruptly halted by independent safety monitors because it was not working: Women who were given pills or vaginal gels containing anti-H.I.V. drugs were becoming infected at roughly the same rate as women who were given placebos.”

Fordham University Center for Ethics Education Director Dr. Celia B. Fisher is also the director of the HIV and Drug Abuse Research Ethics Training Institute (RETI) —  a program funded by a grant from the National Institute on Drug Abuse (# 1R25DA031608-01), for which she also serves as the principal investigator.

“Be wary of blaming payment for research participation for inadequate research methods and participant consultation,” Fisher, an internationally renowned expert in research ethics and health disparities, advised.

Continue reading “Fordham’s Dr. Celia B. Fisher weighs in on failed HIV prevention trial in Africa”