247200 When is it ethical to collect data on serious health conditions in developing countries in the absence of effective referral?

Monday, October 31, 2011

Maria Merritt, PhD , Department of International Health, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins Berman Institute of Bioethics, Baltimore, MD
Ramin Mojtabai, MD, PhD, MPH , Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Joanne Katz, ScD, MS , Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Researchers conducting large community-based studies in developing countries may have the occasion to collect data on serious health conditions (e.g. depression, cognitive disabilities) that are unrecognized or unacknowledged in the local setting, and for which there are few if any services to which participants in need of follow-up diagnosis and care could be referred. On the one hand, the collection of such data in addition to directly serving the specific scientific aims of a particular research study could constitute a broader public health benefit by helping to build up the evidence base needed to understand the magnitude of a public health problem, or by attracting needed attention and resources to the problem as manifested in the local setting. On the other hand, it appears ethically problematic for researchers to set out deliberately to collect data on serious health conditions to which they are not themselves equipped to respond, and for which they know in advance they can make no effective referral. We propose a set of guidelines to support researchers, research sponsors, and research ethics committees in making decisions about whether to collect data in low-resource settings on serious health conditions for which the possibility of effective referral is in doubt.

Learning Areas:
Public health or related research

Learning Objectives:
Identify the circumstances under which is it accurate to say that the health services available in a developing-country research setting are so inadequate that researchers can make no effective referral. Discuss the circumstances under which it is ethically justifiable to collect data on serious health conditions in a developing-country research setting even when researchers cannot themselves respond and can make no effective referral.

Keywords: Community Research, Research Ethics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have doctoral training in moral philosophy and postdoctoral training in bioethics and research ethics, and I am in my 5th year of continuous service on the Institutional Review Board (IRB) of a school of public health.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

See more of: Issues in Public Health Ethics
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