Abstract
Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications.
Highlights
People often view genetic information about themselves as private
This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA)
The privacy issues, are who can get access to these records as well as what can be done with the data once they the employee provides prior, knowing, voluntary, and written authorization or the monitoring is required by federal or state law; (C) the employee is informed of individual monitoring results; (D) the monitoring complies with any federal or state regulations dealing with genetic monitoring; and (E) the employer, excluding any licensed healthcare professional or certified genetic counselor, receives the results only in aggregate form and does not disclose the identity of specific employees
Summary
Each person’s genome, or full complement of DNA, is unique,[1] but the specific variants within an individual’s genome may be widely shared with biological relatives or even across the entire human population This mixed character of the genome—as a uniquely individual assemblage of widely shared common elements—imbues it with a dual private and public significance that confounds any discussion of policy addressing genetic privacy. DNA has been conceptualized as a unique identifier[2] and a person’s book of life,[3] which provides insights into many aspects of the person’s future, perhaps not as much as many people might think This conceptualization leads many people to want to control who has access to genetic information about them and drives calls for strong privacy protection or even personal genetic data ownership. ‘The leading paradigm on the Internet and in the “real,”’ or off-line world, conceives of privacy as a
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