Author Affiliation: Departments of Pediatrics and Medical Ethics, University of Utah, Salt Lake City.
Health Law and Ethics Section Editors: Lawrence
O. Gostin, JD, the Georgetown/Johns Hopkins University Program in Law and
Public Health, Washington, DC, and Baltimore, Md; Helene M. Cole, MD, Contributing
The recent controversy at Virginia Commonwealth University involving
research ethics raises important and complex issues in survey and pedigree
research. The primary questions are whether family members of survey respondents
themselves become subjects of the project and if they are subjects whether
informed consent must be obtained for investigators to retain private information
on these individuals. This article provides an analysis of the ethical issues
and regulatory standards involved in this debate for consideration by investigators
and institutional review boards. The analysis suggests that strong protections
for the rights and welfare of subjects and their family members can be incorporated
into survey and pedigree research protocols without hindering projects with
extensive consent requirements.
Botkin JR. Protecting the Privacy of Family Members in Survey and Pedigree Research. JAMA. 2001;285(2):207-211. doi:10.1001/jama.285.2.207