Safeguards considered for genetic information privacy

Nebraskans would have more control over the use of their genetic information under a bill considered Feb. 7 by the Banking, Commerce and Insurance Committee.

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.

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.

Bostar said direct-to-consumer genetic test 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 six states so far.

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

Ritchie Engelhardt, head of government affairs at Ancestry, testified in support of the measure on behalf of the Coalition for Genetic Data Protection. Ancestry and 23andMe have always adhered to the provisions laid out in the bill, he said, and the proposal would ensure that all other companies do the same.

“LB308 ensures that consumers are in control of how their genetic data is collected, processed and shared for the duration of their relationship with one of our companies,” Engelhardt said.

Jane Seu of the ACLU of Nebraska also testified in favor of the bill, which she said would bolster the limited consumer protections currently in place.

“Medical and genetic information can reveal some of the most personal and private data about us and maintaining control over that information is crucial,” Seu said.

No one testified in opposition to the bill and the committee took no immediate action on it.