The Risky Business of Lifestyle Genetic Testing: Protecting Against Harmful Disclosure of Genetic Information


The technological and scientific advances of nutrigenetic testing imply the future is here, but unfortunately 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 many Americans, including cost-conscious employers and insurers, are seeking such high-tech solutions.

But enthusiasm for nutrigenetics obfuscates unusual problems surrounding protection of genetic information in a market context. Upon providing genetic material, individuals lose control over who can access results. The ramifications raise considerable liberty issues—from privacy, equal protection to perhaps property rights—and can result in widespread, irreversible damage, such as stigmatization and discrimination against tested individuals and all who share that DNA.

Current regulations and safeguards inadequately address problems, 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 legislation to reach nutrigenetic and other lifestyle genetic testing, mandating safeguards preventing harmful disclosure but allowing authorized 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, allowing nutrigenetic testing to provide countless benefits to individuals and society.

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