Genetic Bill of Rights Proposed in Massachusetts

On January 21, 2011, the Massachusetts Genetic Bill of Rights (MA GBR) (pdf) was introduced before the Massachusetts state legislature. At its core, the proposed legislation establishes property and privacy rights for genetic information and genetic material, while providing protections designed to shield individuals from genetic profiling and other misuses of genetic information.

Taken as a whole, the legislation, if enacted, would confer upon Massachusetts residents a significantly expanded set of genetic rights than exist under current federal law. Below we examine several of the bill’s most noteworthy proposals.

The MA GBR addresses perceived gaps and limitations in the coverage provided by major federal statutes, including the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the Genetic Information Nondiscrimination Act of 2008 (GINA), and the Constitution of the Commonwealth of Massachusetts, by seeking to place genetic information on a par with medical records.

The MA GBR’s provisions set basic limitations on the use, including the commercial use, of personal genetic information that would go above and beyond the user agreements and privacy policies employed by some commercial services. For example, the MA GBR prohibits the use of genetic information for marketing or determining credit worthiness. With the proliferation of genetic information, particularly in consumer or commercial contexts, such basic limitations would help address concerns about the lack of mandatory restrictions regarding the sale, transfer or other use of personal genetic data.

The Personal Property Theory of Personal Genomes. But the MA GBR goes much further than mere consumer protection reforms. Section 1 of the proposed legislation explicitly declares genetic information to be “the exclusive property of the individual from whom the information is obtained.” (emphasis added)


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Filed under General Interest, Genetic Testing/Screening, Genomic Policymaking, Genomics & Society, GINA, Industry News, Informed Consent, Legal & Regulatory, Pending Litigation, Privacy

Digging Deeper into the EEOC’s Final GINA Regulations

As we wrote yesterday, last week the Equal Employment Opportunity Commission (EEOC) issued definitive rules and regulations (pdf) with respect to Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA). In our previous post we offered a brief overview of the new regulations, as well as some preliminary suggestions for employers just now coming to grips with GINA.

We also promised to take a closer look in today’s post at several substantive features of the EEOC’s new regulations.

Defining the Terms. The EEOC, the government agency generally responsible for enforcing federal employment nondiscrimination laws, was the logical choice to promulgate regulations under GINA’s Title II, which governs the use of genetic information by employers and similar entities. But not all of GINA’s statutory provisions were within the EEOC’s area of expertise.


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Update: EEOC Issues Final Genetic Nondiscrimination Rules

The Equal Employment Opportunity Commission (EEOC) has issued its final rules and regulations implementing the employment provisions of the Genetic Information Nondiscrimination Act of 2008 (GINA). Signed into law in 2008, GINA took effect in two stages in 2009, with Title I (which applies to health insurers and plans) effective in May and Title II (which applies to employers) effective in November.

When GINA was passed, Congress instructed the EEOC to issue final rules and regulations no later than May of 2009 describing how the agency intends to interpret and enforce the legislation. Although the EEOC missed that deadline by a full 18 months, the Commission did issue definitive rules and regulations (pdf) for Title II of GINA last week. (In its defense, the departments responsible for the Title I – Labor, Health and Human Services and the Treasury – have yet to issue final regulations of their own.) The regulations take effect January 10, 2011.

Reintroducing GINA. Last November, we reported that Title II of GINA had joined ranks with the other federal antidiscrimination laws (the Americans with Disabilities Act of 1990 (ADA), Title VII of the Civil Rights Act of 1964 (Title VII) and The Family and Medical Leave Act (FMLA), to name a few), to provide federal protection against workplace discrimination, in this case on the basis of genetic information. Title II of GINA prohibits the use of genetic information in the employment context, and also restricts employers from acquiring or disclosing genetic information.


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Filed under General Interest, Genetic Testing/Screening, Genomic Policymaking, GINA, Legal & Regulatory, Pending Regulation, Privacy