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Unpublished Paper
The Risky Business of Lifestyle Genetic Testing: Protecting Against Harmful Disclosure of Genetic Information
ExpressO (2007)
  • Gabrielle Z Kohlmeier, George Washington University
Abstract
The technological and scientific advances of nutrigenetic testing imply that the future is here, but unfortunately the legal protections are not. Nutrigenetics—the newly developing science correlating diet and genotypes—promises an easier way to escape the consequences of unhealthy lifestyles. And a large contingent of Americans, including cost-conscious employers and health insurers, are seeking such high-tech solutions. Web-based nutrigenetic testing, purportedly offering custom-tailored plans without a trip to the doctor’s office, thus captures a wide audience. The enthusiasm for nutrigenetics may obfuscate the unusual problems surrounding protection of genetic information, particularly in a market context. Upon providing genetic material, an individual has little control over who can access the results. The ramifications raise considerable liberty concerns—from privacy and equal protection to perhaps even property rights issues—and can result in widespread, irreversible damage, such as stigmatization and discrimination against the tested individual and all who share that genetic material. Current regulations and safeguards inadequately address problems posed even when genetic information is accurate, failing to sufficiently consider who may obtain the information. To improve protections, courts should recognize individuals’ rights to control personal genetic information. Congress should expand existing and proposed legislation to reach nutrigenetic and other lifestyle genetic testing, mandating safeguards preventing harmful disclosure but allowing individuals and authorized third parties to obtain relevant information. Proposed legislation distinguishing derived from raw genetic information and regulating third-party access can be implemented through a double-masking model, thereby allowing nutrigenetic testing to provide countless benefits to individuals and society.
Keywords
  • privacy,
  • discrimination,
  • disparate treatment,
  • genetics,
  • genetic testing,
  • confidentiality
Disciplines
Publication Date
September, 2007
Citation Information
Gabrielle Z Kohlmeier. "The Risky Business of Lifestyle Genetic Testing: Protecting Against Harmful Disclosure of Genetic Information" ExpressO (2007)
Available at: http://works.bepress.com/gabrielle_kohlmeier/1/