title: Privacy and policy for genetic research.
abstract: I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research: (1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; I discuss strengths and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research.
authors.affiliation: Department of Philosophy, Clark University, 950 Main Street, Worcester, MA 01610, USA. jdecew@clarku.edu
authors.forename: Judith Wagner
authors.initials: JW
authors.lastname: DeCew
mesh_terms: D022126:Access to Information / Q000331:legislation & jurisprudence; D026683:Advisory Committees; D035843:Biomedical Research; D003219:Confidentiality / Q000331:legislation & jurisprudence / Q000592:standards; D030541:Databases, Genetic; D030881:Disclosure / Q000331:legislation & jurisprudence / Q000592:standards*; D005062:European Union; D035082:Federal Government; D030661:Genetic Privacy / Q000331:legislation & jurisprudence; D036281:Genetic Research; D033161:Government Regulation; D017408:Guidelines as Topic; D020408:Health Insurance Portability and Accountability Act; D006302:Health Services Research; D006801:Humans; D007258:Informed Consent; D007878:Legislation as Topic; D008499:Medical Records / Q000331:legislation & jurisprudence; D016347:Medical Records Systems, Computerized / Q000331:legislation & jurisprudence; D017008:Negotiating; D010355:Patient Identification Systems / Q000331:legislation & jurisprudence; D018907:Privacy / Q000331:legislation & jurisprudence; D011640:Public Policy; D011785:Quality Assurance, Health Care; D012927:Social Control, Informal; D014481:United States