Privacy rules for DNA databanks. Protecting coded 'future diaries'.

Publisher: American Medical Association Country of Publication: United States NLM ID: 7501160 Publication Model: Print Cited Medium: Print ISSN: 0098-7484 (Print) Linking ISSN: 00987484 NLM ISO Abbreviation: JAMA Subsets: MEDLINE

Original Publication: Chicago : American Medical Association, 1960-

DNA* ; Databases, Nucleic Acid*; Civil Rights/*standards ; Databases, Factual/*standards; Civil Rights/legislation & jurisprudence ; DNA Fingerprinting/standards ; Databases, Factual/legislation & jurisprudence ; Disclosure ; Federal Government ; Genetic Diseases, Inborn ; Government Regulation ; Humans ; Information Dissemination ; Medical Informatics/legislation & jurisprudence ; Medical Informatics/standards ; Medical Records/legislation & jurisprudence ; Medical Records/standards ; United States

In privacy terms, genetic information is like medical information. But the information contained in the DNA molecule itself is more sensitive because it contains an individual's probabilistic "future diary," is written in a code that has only partially been broken, and contains information about an individual's parents, siblings, and children. Current rules for protecting the privacy of medical information cannot protect either genetic information or identifiable DNA samples stored in DNA databanks. A review of the legal and public policy rationales for protecting genetic privacy suggests that specific enforceable privacy rules for DNA databanks are needed. Four preliminary rules are proposed to govern the creation of DNA databanks, the collection of DNA samples for storage, limits on the use of information derived from the samples, and continuing obligations to those whose DNA samples are in the databanks.

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Indexing Agency: KIE Local ID #: 42350.
Keywords: Genetics and Reproduction; Legal Approach
Note: KIE BoB Subject Heading: confidentiality/legal aspects Note: KIE BoB Subject Heading: DNA fingerprinting Note: Full author name: Annas, George J

9007-49-2 (DNA)

Date Created: 19931117 Date Completed: 19931201 Latest Revision: 20161017

20221213

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