Protecting the privacy of family members in survey and pedigree research

The recent controversy at Virginia Commonwealth University involving resear ch ethics raises important and complex issues in survey and pedigree resear ch. 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 infor mation on these individuals. This article provides an analysis of the ethic al issues and regulatory standards involved in this debate for consideratio n by investigators and institutional review boards. The analysis suggests t hat strong protections for the rights and welfare of subjects and their fam ily members can be incorporated into survey and pedigree research protocols without hindering projects with extensive consent requirements.