Ethical Reflections on the Conduct of HIV Research with Community Members: A Case Study

Abstract

Some researchers continue to engage in “helicopter” or “parachute” research and do not ethically engage or collaborate with communities from which data are collected. This paper uses a case study to discuss the ethical issues arising from these research practices and the importance of increasing meaningful community involvement in research. Set in the context of research among older people living with HIV, the case study is followed by the perspectives of four research stakeholders. Through these perspectives, this paper demonstrates the ethical perils and harms that stem from research practices exemplified in the case. We argue instead for researchers to practice participatory research methods in line with community-based participatory research approaches (CBPR), good participatory practices (GPP), the Denver Principles, and CIOMS guidelines. Towards this end, we describe tools developed in collaboration with stakeholders in the research process to help researchers incorporate community participation and reduce unethical research conduct.

The Vulnerable Workforce: A Call for Research

“…These perceptions carry a historical grain of truth if we consider controversial research practices that raised doubts about researchers' ethics. For instance, in the field of biomedical research, the term "helicopter" or "parachute" research has been introduced to refer to research practices characterized by dropping into communities, gathering data or specimens (e.g., blood), and leaving without much concern about improving the health, social equity, and quality of life of community participants (Brown, Dubé, Kuzmanovic ́, Long, & Marg, 2021). Although such unethical research practices are no longer as pervasive due to formal Institutional Review Board (IRB) procedures, the reputational damage resulting from past violations and poor research practices reverberates throughout our profession (see Brown et al, 2021).…”

Perceptions of HIV Research Participation Among Gay, Bisexual, and Other Men who Have Sex with Men and Transgender and Nonbinary Adults: Results From a Midwest Pride Event

“…Indeed, research findings from the current Pride survey are often disseminated in presentations to the community in Milwaukee. As an additional resource, Brown et al (2021) provide keen insights into community-based HIV research via a case study, with a good participatory practices checklist that can be used to guide collaborative HIV research endeavors.…”