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.
RETI Director Dr. Celia B. Fisher and Cohort 4 fellows Dr. Erin Bonar and Dr. Faith Fletcher presented a session entitled, “Enhancing the Responsible Conduct of Adolescent and Young Adult Health Research through Empirical Studies on Research Ethics.”
This session featured presentations describing empirical studies on research ethics issues that can help IRBs evaluate human subjects protections for health research involving adolescents and young adults. The research described draws on the perspectives of adolescents and parents to illuminate opportunities and barriers to the responsible conduct of HIV, drug use, and mental health research.
During this session, Bonar reviewed how mixed-method research (surveys and interviews) can illuminate best practices for assessing risks and benefits and protecting confidentiality in mobile health-based research on drug use and sexual risk among emerging adults. In addition, Fletcher described how empirical data on African American mothers’ and daughters’ attitudes toward adolescent participation in HIV biomedical prevention trials can inform IRB evaluations of research vulnerability. Finally, Fisher outline how to evaluate ethical justifications for requests to waive guardian permission using data from an innovative, web-based, asynchronous focus group methodology that examined ethical barriers and facilitators to lesbian, gay, bisexual and transgender (LGBT) youth participation in HIV prevention medication adherence trials.
Cohort 3 RETI Fellow Dr. Alexis Roth of Drexel University participated in a panel discussion entitled “Innovations in Subject Perspectives: Risks, Benefits, and Incidental Findings.” Roth presented findings from her RETI mentored research project (MRP) entitled “Persons Who Inject Drugs’ Perspectives on the Risks and Benefits of Participation in a Mobile Health (mHealth) Study of Polydrug Use.”
According to the research description, “mHealth is an emerging field that harnesses the increasingly sophisticated capabilities of mobile communications technology for measurement and intervention in health research and care. As a new field of inquiry, researchers have yet to articulate best-practice guidelines for mHealth projects that enroll vulnerable populations, especially those who engage in stigmatizing and illegal behavior (e.g. persons who inject drugs).” The data collected in the study suggest that little harm and many potential benefits may exist for people who inject drugs in engaging in high-intensity behavioral studies using mHealth platforms.
Cohort 2 fellow Dr. Brenda Curtis and Cohort 4 fellow Dr. Abby Rudolph collaborated on a presentation entitled “The Internet and the IRB: A Review of Human Subjects Issues in Technology-Based Research.”
This session updated participants on recent forms of technology-based intervention (TBI) research and the attitudes and perspectives of research participants with regard to technology. Discussion focused on IRB review of three major areas of ethics concern: privacy and confidentiality, informed consent, and validity of data collected in general and in research on socially and legally sensitive areas.
Of the RETI training experience, Roth said: “This is a demanding fellowship but one that has paid off in spades. Not only was I trained in conducting empirical research on research ethics, I also forged strong relationships with my mentor, faculty, and other fellows. Beyond this, this project resulted in scientific contributions that are important to the fields of ethics and substance abuse. I can’t wait for my publications to come out and to use my findings to build hypotheses I can test in subsequent grants. Participating in RETI was an invaluable experience.”
The Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute is now accepting applications for the 2016 Summer Institute. Please visit our website or contact Dr. Elizabeth Yuko (firstname.lastname@example.org) for more information. The deadline for applications is February 25, 2016.