This article has four goals: (1) review the major roles played by family history information (FHI) in biomedical research, (2) explore what "private" might mean in the context of the collection of FHI, (3) examine possible sources of harm from the collection of FHI, and (4) discuss the implications of possible special restrictions on "sensitive" FHI about psychiatric and drug use disorders. My perspective on these issues is that of an active biomedical researcher who has been obtaining and analyzing FHI for over 20 years in the context of family, twin, and molecular genetic studies of psychiatric and drug abuse disorders.
Role of FHI in Medical Research
FHI is used in three major ways in biomedical research: (1) as a risk factor that impacts on prevention strategies, etiology, course, or treatment of patients; (2) as an additional source of diagnostic information for patients or family members in genetic investigations; and (3) as a screening tool for molecular genetic studies to identify informative families for further analysis.
All major biobehavioral disorders such as coronary artery disease, alcoholism, diabetes, asthma, depression, cancer, and hypertensionwhich together constitute the major causes of morbidity and mortality in first-world countries-"run in families." For many of these disorders, a