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Bioethicists to develop model for providing care to research subjects in low-resource communities

Johns Hopkins Medicine

The National Institutes of Health has awarded a grant to investigators at the Johns Hopkins Berman Institute of Bioethics to study obligations researchers may have to provide ancillary health care unrelated to their study while working in impoverished settings.

The aim of the four-year, $675,000 project is to develop a model to help investigators make "socially responsible decisions" when conducting community-based health research, according to Holly Taylor, Ph.D., M.P.H., a core faculty member at the Berman Institute and an assistant professor in the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health.

"We are excited to have the opportunity to find out how investigators across the globe actually decide whether to provide ancillary care to research subjects and incorporate these results into the development and refinement of a normative model of a researcher's obligation to provide such care," said Taylor, the project's lead investigator.

The research team will include Maria Merritt, Ph.D., also on faculty at the Berman Institute and assistant professor in the Department of International Health at the School of Public Health, as well as public health scientist Luke Mullany, Ph.D., an associate professor in the Department of International Health who specializes in global disease epidemiology and control.

Taylor said the team represents an ideal mix of expertise to advance bioethics research in public health -- social science, moral philosophy and the delivery and evaluation of public-health interventions.

"Ancillary care" refers to health care needed by those participating in research, but not central to the goals of a given study. Investigators doing community-based research among underserved populations often see people with unmet health needs caused by a lack of nutrition, clean water, sanitation and basic health services.

The dilemma that investigators face is twofold: what to do, and how much to do without compromising research integrity and exhausting research resources. "Such situations present perplexing ethical challenges for researchers," Taylor noted.

Taylor and her colleagues will conduct quantitative surveys -- both to find out how much ancillary care researchers currently provide in different settings and to identify factors that lead to care being given. Lastly, they will develop and refine a model that will clarify researchers' obligations, specifically in community settings.

An ethical framework to guide the provision of ancillary care currently exists, but it is limited by its focus on research carried out within a clinical facility.

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Preliminary work on this project was made possible by the School of Public Health's Faculty Innovation Fund and will now be supported by Award No. R01AI085147, which was issued by the National Institute of Allergy and Infectious Diseases.

Berman Institute of Bioethics: http://www.bioethicsinstitute.org/

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