Genetic Confidentiality and Nondiscrimination Act of 1997

Summary

TABLE OF CONTENTS: Title I: Collection, Storage, and Analysis of DNA Samples Title II: Disclosure of Genetic Information to Third Persons Title III: Authorization by Written Informed Consent Title IV: Discrimination Prohibited Title V: Research Activities Title VI: Miscellaneous Provisions Title VII: Enforcement Title VIII: Effective Date; Applicability; and Relationship to Other Laws Genetic Confidentiality and Nondiscrimination Act of 1997 - Title I: Collection, Storage, and Analysis of DNA Samples - Allows DNA collection only with written authorization and after specified notice. Allows storing or conducting a DNA analysis only in accordance with the authorization and notice. Title II: Disclosure of Genetic Information To Third Persons - Allows genetic information disclosure and redisclosure only with written authorization. Entitles an individual to inspect and receive a copy of his or her genetic information. Provides for amendment of records and for disclosures pursuant to compulsory process. Title III: Authorization by Written Informed Consent - Regulates collection and disclosure authorizations. Title IV: Discrimination Prohibited - Prohibits an employer from requesting, requiring, or using genetic information of an employee or prospective employee to restrict any right or benefit otherwise due or available. Allows an employer to request, require, or use genetic information to: (1) permit a genetically susceptible employee to avoid occupational mutagenic or teratogenic exposure; or (2) determine a genotype that is otherwise directly related to the work and is consistent with business necessity. (Sec. 402) Prohibits health insurers from discriminating on the basis of any molecular genetic information about a healthy individual or a healthy family member, or on the basis of a request for or receipt of genetic services. Prohibits insurers from requiring genetic testing or questioning. Provides for enforcement. Title V: Research Activities - Allows DNA analysis as part of a research project only if an Institutional Review Board, or similar board in the research industry, has made specified determinations. Requires destruction of samples at completion of the project or withdrawal of the subject unless specific authorization is obtained to store after that date. Sets forth rules for pedigree or linkage analysis. Regulates disclosure for research purposes. Title VI: Miscellaneous Provisions - Requires annual notification of employees of a person who collects, stores, or analyzes DNA regarding their responsibilities under this Act and related penalties. Regulates the transfer of samples or information, including regarding discontinuance of services. Title VII: Enforcement - Provides for a private right of action by any individual whose rights under this Act have been violated. Includes in damages: (1) in the case of negligent violations, actual damages, treble damages if there is profit or monetary gain, and costs and attorney's fees; and (2) in the case of willful violations, actual damages, punitive damages, and costs and attorney's fees. Provides, in the case of employment discrimination, for actual damages, treble damages if there is profit or monetary gain, and costs and attorney's fees. Authorizes actions by the Attorney General for injunctive relief and civil penalties. Title VIII: Effective Date; Applicability; and Relationship to Other Laws - Provides for the effective date and applicability of this Act. Prohibits a State from establishing or enforcing any disclosure law or regulation that does not conform to this Act.

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• Introduced in Senate (text)

  Introduced in Senate · EN · 11 March 1997

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• Introduced in Senate (PDF)

  Introduced in Senate · EN · 11 March 1997

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• Introduced in Senate

  summary · EN · 11 March 1997

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