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Good for Civil Rights, Good for Science

This weekend, federal rules enforcing the Genetic Information Nondiscrimination Act go into effect. From then on, there will be stiff legal penalties for hiring or employment discrimination based on genetic data, or for companies that request their employees submit to genetic testing. Rules governing genetic discrimination in group health insurance plan coverage take effect December 7. The forward-looking law was a major progressive victory for civil rights when it passed last year, but there significant gaps in the legislation, as Susannah Baruch explained in June:

What GINA does not do is require insurers to pay for care that a genetic test indicates would clearly be beneficial. Thus, there are no guarantees that patients will be able to access or afford therapies and screenings that could reduce their risks. Without further reform efforts to ensure that preventive strategies are within reach, GINA’s protections from discrimination will ring hollow.

This is a gap that health reform legislation can close, she argues. But not only can genetic testing help individuals make important health care decisions, she explains, it can help those patients and their families understand and plan for financial risks that might arise from devastating illnesses. In these instances, people may be particularly interested in buying long-term care, disability, or life insurance—three markets that are not covered by GINA’s protections.

Ideally, GINA will also help advance biomedical science. Prior to the law, Rick Weiss explained, “people were likely to balk at requests to participate in genetic research, which depends on large-scale participation by diverse populations to make new biomedical discoveries about propensities to diseases and other aspects of inheritance.” As Steven Greenhouse reports at the New York Times: “In a nationwide survey, 63 percent of respondents said they would not have genetic testing if employers could see the results.” Whether the protections will encourage more participation in research remains to be seen, but in this instance, what’s good for civil rights may also be good for science.

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