Genomic Research and Human Subject Privacy

摘要

Interest in undetstanding how genetic variations influence heritable diseases and the response to medical treatments is intense. The academic community relies on the availability of public databases for the distribution of the DNA sequences and theirvariations. However, like other types of medical information, human genomic data are private, intimate, and sensitive. Genomic data have raised special concerns about discrimination, stigmatization, or loss of insurance or employment for individuals andtheir relatives (1, 2). Public dissemination of these data poses nonintuitive privacy challenges.