LGBTQIA+ Equity in Human Subjects Research

In recognition of Pride Month, we’d like to highlight some resources—both from PRIM&R and from other organizations—that explore the importance of recognizing and including LGBTQIA+ people in research, strategies for reviewing LGBTQIA-specific research, and the unique ethical considerations for research with LGBTQIA+ populations (particularly children and youth).

*NEW* Learning Module: LGBTQIA+ Equity in Human Subjects Research Review – Acknowledging the Whole Research Participant

In our new learning module, LGBTQIA+ Equity in Human Subjects Research Review – Acknowledging the Whole Research Participant, Amy Ben-Arieh, JD, MPH, explains LGBTQIA+ health disparities and the importance of leveraging community strengths, explores inclusive research data collection methods, and introduces pragmatic strategies for IRBs seeking to adopt a more equitable lens in research ethics review. 

This module is also available as an add-on for Ethical Research Oversight Course (EROC) subscriptions.

Webinar: LGBTQIA+ Equity in Human Subjects Research – Strategies for Justice-Focused IRBs

LGBTQIA+ people make up approximately 4.5% of the United States population but face worse health outcomes when compared to their non-sexual and gender-minority peers. Despite this, the LGBTQIA+ population remains underrepresented and under-recognized in biomedical and social and behavioral research.

In the recording from this webinar, newly free for PRIM&R members, the presenters discussed LGBTQIA+ health disparities, explored inclusive research data collection methods, and introduced meaningful strategies for IRBs when reviewing studies including LGBTQIA-specific research.

AER17 Panel: Social, Behavioral, and Biomedical Transgender Research—Needs and Challenges

Many medical professionals have only recently become aware of the issues transgender and non-binary people confront in healthcare institutions, schools, the workplace, and in their personal relationships. Some of these problems arise from gaps in medical knowledge regarding safe and effective means of helping them to transition to their sexual phenotype, while others arise from health providers’ failure to respond appropriately to the needs of these patients.

Yet, studies on the direct and indirect effects of stigma and discrimination against transgender patients, as well as research regarding medical interventions for transitioning, bring up special challenges for investigators and IRBs. Among these are the difficulties in assessing benefits and risks of social, behavioral, and biomedical research in this field—including the nonphysical risks that can arise from being a research participant—and issues of consent and assent to novel interventions with children and youth.

This panel, available for free, provides information about various transgender groups and examine the ethical issues that arise for these populations in social, behavioral, and biomedical research.

Ethical Research: Good Practice Guide to Researching LGBT Communities and Issues | LGBT Foundation

This document from the LGBT Foundation aims to aid researchers in identifying, understanding and resolving ethical issues at all stages of the research process, with added focus on how these issues might apply to work with lesbian, gay, bisexual and trans (LGBT) communities. The guide consists of five sections each covering a key principle of ethical research practice. Each section covers relevant questions that researchers should be asking themselves when carrying out their work and, where appropriate, offers additional information on how each question might apply to LGBT research.

LGBT Bioethics: Visibility, Disparities, and Dialogue | Hastings Center

Medicine and law have served in the past as society’s enforcement arm toward sexual minorities, in ways that robbed many people of their dignity. The field of bioethics has an obligation to discuss that history and to help us as a society take responsibility for it. The essays in this special report from the Hastings Center take up this call by exploring, among other things, the role of medicine in gender identity, the complexities of addressing gender dysphoria in children, constraints on conducting research on lesbian and gay youth, problems in the physician-patient relationship for lesbian and gay patients, and both the importance of trying to elicit information about a patient’s sexual orientation and the difficulty. Selected commentaries are available for free.

For more resources on diversity, equity, inclusion, and justice in research, visit our webpage.