Family history information in biomedical research

Abstract

Family history information has been widely used in biomedical research for many years. Ethical concerns have recently been raised about the collection of such information. This article reviews the major roles played by family history information in biomedical research, explores what "private" means in the context of the collection of such information, examines the possible sources of harm from the collection of family history information, and discusses the implications of the possible special restrictions on "sensitive" family history information about psychiatric and drug use disorders. Family history information is vital to many aspects of biomedical research, especially human molecular and epidemiologic genetics. Substantial uncertainty remains about who "owns" family history information, and in several cases, such as childhood sexual abuse, it is hard to justify the position that "third-party" consent is needed. In many instances, the risk to third-party subjects can be minimized by safeguards to confidentiality and data integrity. Adding special restrictions for the collection of family history information on psychiatric and drug abuse disorders may reinforce stigma and substantially burden researchers examining these vital public health problems.