THE GENETIC PRIVACY ACT AND COMMENTARY

THE GENETIC PRIVACY ACT AND COMMENTARY George J. Annas, JD, MPH Leonard H. Glantz, JD Patricia A. Roche, JD Health Law Department; Boston University School of Public Health; 80 East Concord Street; Boston, MA 02118 Tel. (617) 638-4626; FAX: (617) 638-5299; email: [email protected] The Genetic Privacy Act and Commentary is also the Final Report of a project entitled "Guidelines for Protecting Privacy of Information Stored in Genetic Data Banks" which was funded by the Ethical, Legal & Social Implications of the Human Genome Project, Office of Energy Research, U.S. Department of Energy, No. DE-FG02-93ER61626 Additional support was provided by Boston University School of Public Health February 28, 1995 CONTENTS I. Introduction II. The Genetic Privacy Act Sec. 1. Short title; table of contents. Sec. 2. Findings and purposes. Sec. 3. Definitions. PART A - - COLLECTION AND ANALYSIS OF DNA SAMPLES Sec. 101. Collection of DNA samples. Sec. 102. Analysis of DNA samples. Sec. 103. Authorization for collection and storage of individually identifiable DNA samples for genetic analysis. Sec. 104. Ownership and destruction of DNA samples. Sec. 105. Notice of rights and assurances. PART B - - DISCLOSURE OF PRIVATE GENETIC INFORMATION Sec. 111. Disclosure of private genetic information. Sec. 112. Authorization for disclosure of private genetic information. Sec. 113. Inspection and copying of records containing private genetic information. Sec. 114. Amendment of records. Sec. 115. Disclosures pursuant to compulsory process. PART C - - EXCEPTIONS FOR IDENTIFICATION AND COURT-ORDERED GENETIC ANALYSIS Sec. 121. Identification of dead bodies. Sec. 122. Identification for law enforcement purposes. Sec. 123. Collection and analysis of DNA samples pursuant to court ordered analysis.

THE GENETIC PRIVACY ACT AND COMMENTARY

Documents

genetic privacy

privacy law

privacy

data protection

law of privacy

data protection law