Protecting the privacy of family members in survey and pedigree research

JAMA. 2001 Jan 10;285(2):207-11. doi: 10.1001/jama.285.2.207.


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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Data Collection / legislation & jurisprudence
  • Data Collection / standards*
  • Ethics, Research*
  • Family*
  • Genetic Privacy*
  • Genetic Research* / legislation & jurisprudence*
  • Government Regulation*
  • Humans
  • Informed Consent
  • Privacy* / legislation & jurisprudence
  • Research Subjects*
  • United States