Safeguards advanced for genetic information privacy

Nebraskans would have more control over use of their genetic information under a bill advanced from general file Jan. 23.

Under LB308, sponsored by Lincoln Sen. Eliot Bostar, express consent would be required from Nebraska residents for the sharing, storage and use of any consumer genetic data by direct-to-consumer genetic testing services.

Bostar said direct-to-consumer genetic tests are becoming more popular and that roughly one in five Americans has taken one. This increase in popularity has led to growing concerns about how that data is used, he said, because it is not regulated in the same manner as genetic data arising from medical tests.

Ancestry and 23andMe developed privacy best practices in 2018, Bostar said, which were translated into model legislation that has been adopted by 11 states so far.

“Genetic information consists of our most sensitive and personal information,” Bostar said. “It uniquely identifies an individual, reveals their propensity to develop certain diseases and gives insight on family, ethnic and cultural background.”

Under the bill, a direct-to-consumer genetic testing company could not disclose a consumer’s genetic data to any entity offering health, life or long-term care insurance or to an employer without written consent. The measure also would require a process by which consumers could delete their accounts and their genetic data.

Following adoption of a technical Banking, Commerce and Insurance Committee amendment on a 39-0 vote, lawmakers advanced LB308 to select file 39-0.