Journal of Continuing Education in the Health Professions



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CURRENT ISSUE BACK ISSUES SUBSCRIBE ADVERTISE ABOUT JCEHP FOR AUTHORS JCEHP AWARD SEARCH (Members only) FULL-TEXT		Volume 21 (4) Volume 21, Issue 4, Fall 2001 J Contin Educ Health Prof 2001; 21(4):215-223 ISSUES IN RESEARCH Family history information in biomedical research Kendler KS A b s t r a c t 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. Lessons for Practice Given the importance of family history information in many aspects of biomedical research and especially in human molecular genetics, it is vital to find an appropriate balance between the need for subject protection and the societal good that will flow from this research. The definition of "private" information in the context of families is inherently ambiguous. We cannot "protect" the rights of third parties without at the same time restricting the rights of "first parties". The critical question is how these rights are to be balanced and by whom. It is difficult to judge a priori what kind of information is "sensitive" to individuals. Careful thought should be given before ethical review panels reinforce social prejudices such as that psychiatric disorders are more stigmatizing than cancer and therefore require special consent procedures when assessed in third parties. MeSH Terms: Confidentiality; Genetic Privacy; Human Experimentation; Medical History Taking; Mental Disorders; Pedigree; Research; Support, U.S. Gov't, P.H.S. Publication Type: Review
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