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Test Avoidance

This post has been updated to reflect the current enrollment goals for the BabySeq study and to include the co-PI.

People may be avoiding genetic tests because of fears of discrimination by insurance companies, Gizmodo reports.

Harvard Medical School's Robert Green is leading up the BabySeq study along with joint-PI Alan Beggs, and it aims to enroll 400 newborns, half of whom will be sequenced, and follow them to see how sequencing affects their care. But Green he tells Gizmodo that he and his colleagues have had trouble signing people up.

"People decline genetic tests because of concerns over privacy and genetic discrimination, especially insurance discrimination," he says. "This is stymying biomedical research and people's access to healthcare."

Gizmodo notes that, in the US, the 2008 Genetic Information and Nondiscrimination Act offers protections against discrimination by health insurers and employers and the Affordable Care Act also bars discriminating against people based on pre-existing conditions uncovered by a genetic test. However, GINA doesn't extend to other types of insurance such as disability or long-term care — and a recently proposed bill would allow employers to require employees to undergo genetic testing if it is part of a wellness program — and the ACA may soon be rolled back, Gizmodo adds.

Green says the US might want to consider the UK model in which people have a right to insurance and in which insurers can consider information that will influence risk. "There are ways can we satisfy business needs of companies and also satisfy the privacy of consumers," he tells Gizmodo. "But right now, we in the genetics community are actually aghast."