‘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.

 

TEDxFordhamUniversity: Lesson in Bioethics Given by Golden Girls | Dr. Elizabeth Yuko

As one of the most groundbreaking sitcoms of all time, The Golden Girls introduced a range of bioethical issues on the show regarding medicine, the human body and women’s health.

In this TEDx Talk, Dr. Elizabeth Yuko, a Fordham University Center for Ethics Education  fellow and adjunct professor, discusses how influential Golden Girls was, and still is, as a lens for the study of bioethics and its principles using examples from the show’s most notable episodes.

Watch below:

Dr. Elizabeth Yuko is also the Health Editor at SheKnows Media, a women’s lifestyle digital media company operating SheKnows.com. BlogHer.com. HelloFlo.com and STYLECASTER.com. Please visit her website and Twitter page for more information.

Fordham RETI Fellow Discusses Addiction with U.S. Surgeon General on NPR

Dr. Erin Bonar, University of Michigan

Earlier this month, the United States Surgeon General issued a report declaring substance use disorders, like addiction, the “most pressing public health crises of our time.” The report called the country to action to both help those struggling with the chronic illness of addiction and change how addiction in the U.S. is perceived as a “criminal justice problem” rather than the public health problem that it is.

Fordham University Center for Ethics Education HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) Fellow Dr. Erin Bonar, an assistant professor and researcher at the University of Michigan, recently addressed addiction in a panel along with the U.S. Surgeon General on NPR titled, “How To Spot — And Treat — Addiction In Your Family.”

“Many people still believe that addition is a moral failing or a sign of weakness, but decades of research as summarized in the surgeon general’s report support the notion that this is medical condition brought about by a number of factors, including genetics and environmental influences,” Bonar explained.

Continue reading “Fordham RETI Fellow Discusses Addiction with U.S. Surgeon General on NPR”

Now Accepting Applications: Fordham University’s Master’s Degree in Ethics and Society and the HIV and Drug Abuse Prevention Research Ethics Training Institute

computer-1185569_1280.jpg
Image via

Master’s Degree in Ethics and Society: Spring 2017

The Master of Arts in Ethics and Society provides students with a solid grounding in moral theory and ethical practice in fields such as philosophy, theology, bioethics, research ethics, business and law.

Preparation for:
– Doctoral programs in the humanities and biological and social sciences
– Professional degree programs in medicine and law
– Employment in a variety of fields including government, nonprofit, academia, business, and healthcare)

Engage in practicum experiences throughout the New York Metropolitan Area at:
– St. Barnabas Hospital
– Global Bioethics Initiative
– Generation Citizen
– Fordham University Institutional Review Board
– Families and Work Institute
– And more

Continue reading “Now Accepting Applications: Fordham University’s Master’s Degree in Ethics and Society and the HIV and Drug Abuse Prevention Research Ethics Training Institute”

Finding the Questions: The Ethics of Voluntourism

Australian_volunteer_Kylie_Hinde_worked_with_the_Centre_for_disability_in_Development_in_Bangladesh,_2011._Photo-_Kylie_Hinde_-_AusAID_(10675736806).jpg
Image via

STUDENT VOICES | CHYNN PRIZE THIRD-PLACE WINNER

By Margaret Desmond

It is almost two in the morning and I am standing on the side of street in Guatemala while the driver rings the bell for what must be the sixth time. No one is answering the door. This house is supposed to be my home for the next two weeks. Internally I feel there is some universal karmic force at work which is punishing me for falling into the trap of “voluntourism.” I could have just come on vacation and explored but instead I chose to set up volunteer work. While a common choice among other college students, I really struggled with the ethical dilemmas that voluntourism presents.

Continue reading “Finding the Questions: The Ethics of Voluntourism”

Fordham Study Addresses Health Care of Bisexual Adolescent Girls

Stethoscope_rainbow.jpg
Image via

For bisexual female adolescents,  proper sexual healthcare is difficult to obtain due to healthcare providers’ judgmental attitudes and assumptions of patient heterosexuality, and lack of opportunities for HIV and sexually transmitted infections (STI) testing. Additionally, youth openness with healthcare providers is restricted due to stigma experienced within families of bisexual teen girls and concerns of confidentiality. These findings were published in LGBT Health, a Mary Ann Liebert, Inc. publication

Principle investigators of this NIH-funded study, Dr. Celia B. Fisher, Director of the Fordham University Center for Ethics Education and Dr. Brian Mustanski, Director of the Institute for Sexual and Gender Minority Health and Wellbeing, along with Drs. Miriam Arbeit and Kathryn Macapagal, describe these health care disparities in the article, Bisexual Invisibility and the Sexual Health Needs of Adolescent GirlsThe study analyzed bisexual female adolescents’ perspectives on their access to health information and services provided by health care professionals.

In addition to attitudes and assumptions of healthcare providers and stigma within families, the findings also included limited school-based sexual health education as an important factor contributing to insufficient health care for bisexual adolescent girls.

“The findings from our study are consistent with the unfortunate fact that sexual health care of adolescent girls has largely been absent or focused primarily on birth control tools that do not prevent risk of HIV and other STI – especially if male partners refuse to use condoms,” notes Fisher, Director of Fordham Center for Ethics Education, “and this problem is exacerbated for bisexual girls who may be unprepared for sexual experiences with male partners or who engage in such experiences to avoid social stigma.”

The researchers concluded that practitioners must improve standard sexual health practices involving female youth by integrating nonjudgmental questions regarding bisexuality. According to Fisher, the study “underscores the need for additional training of family physicians and gynecologists to engage in patient centered discussions that help to overcome bisexual invisibility and fears of medical discrimination that are barriers to bisexual girls sexual health.” In a recent article about the study, William Byne, MD, PhD of LGBT Health, adds, “Knowledge of a patient’s sexuality is essential to the biopsychosocial model of clinical practice.”

According to the study, other forms of support of bisexual health among adolescent girls include addressing stigma, increasing sensitivity to privacy and expansion of school-based sexual health education.

Read more about this research in the News Medical Life Sciences article as well as in LGBT Health.

First Baby Born Via ‘3-Parent IVF’ Raises Ethical Questions

ivf-1514174_1280
Image via

On Tuesday it was reported that the first live birth resulting from mitochondrial donation was born in New York to a Jordanian couple. According to The New York Times, the fertility procedure – also referred to as “3-parent IVF” – was performed at a Mexican clinic and the baby is a healthy boy.

The purpose of a donor for this couple was to “overcome flaws in a parent’s mitochondria that can cause grave illnesses in babies.” Thus, the DNA from the egg of the healthy mother who has the mutation, is placed in the egg of a healthy donor after her nuclear DNA is removed. It is important to understand that the mitochondria of a cell are completely separate entities from DNA that determines inheritance.

The Jordanian couple took their chances with the procedure as they had lost two other children to the disease, one at age 6 and the other at 8 months. Dr. John Zhang performed the procedure at the New Hope Fertility Center’s clinic in Mexico as it is “effectively banned” in the United States, though it has been legal in the United Kingdom since last year.

The child is now 5 months old and healthy with normal mitochondria, as was first reported by New Scientist magazine.

Continue reading “First Baby Born Via ‘3-Parent IVF’ Raises Ethical Questions”