No faulty-gene carrier need apply


A bill designed to prohibit discrimination based on genetic information in terms of health insurance and employment is awaiting a vote in the US Senate. There have been several similar but ultimately unsuccessful legislative attempts over the past 12 years. It is crucial that this bill be enacted into law to address a public fear likely to limit patient access to predictive genetic testing and to discourage participation in genetic research.

The August Editorial examines how the Genetic Information Nondiscrimination Act of 2007 (GINA 2007) would put a long-awaited end to a patchwork of state laws (see the National Conference of State Legislatures website for a view of the current situation).

The NHGRI Ethical, Legal, and Social Implications (ELSI) research program website has a lot of information on GINA 2007, including a timeline of previous and current legislative attempts, studies on genetic discrimination in the US, as well as the report accompanying the bill in the Senate.

As the editorial discusses, the legal situation is a similar patchwork in Europe. Many countries have signed the Convention for Human Rights and Biomedicine in 1997, but there are notable absences and not all signatories have ratified the Convention (see list of signatures and ratifications on the Council of Europe website). According to a recent report by the EU-funded project EuroGentest, even ratification of the Convention has not leveled discrepancies between national laws.

This confusing legal situation is not an encouraging context for genetic research and it will prevent individuals from fully benefiting from the progress of genomic medicine. If the US finally enact the federal law contained in GINA 2007, this should constitute a serious incentive for European countries to follow suit.

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