Identifiability in Genomic Research

Genomic research now generates large amount of data that cover portions of the human genome at the detailed levels of individuals. Data of disease-related gene is linked to clinical, family, and social data. However, that has a risk of incorrect and deliberate disclosure of data in various scenes of our life.

In the United States, Health Information Portability and Accountability Act (HIPAA) and other federal laws restrict the release of and protect personal data concerning health care and research against outside menaces, keeping confidentiality and safety by limitation of sharing of the data, open access, and the use of the data. Some similar laws exist in Europe.

Although it is not easy to keep a proper balance between encouraging genomic research and protecting privacy and confidentiality of research participants, retension of the balance obligatory for maintaining the trust of research. (Summarized by Dr. Naoko Abe, M.D.)

ETHICS: Identifiability in Genomic Research
William W.Lowrence and Francis S.Collins
SCIENCE 3 AUGUST 2007: 600-602

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