Nevada committee advances bill to restrict collection, sale and disclosure of autism and genetic data

Assembly members advanced Assembly Bill 589 on a motion to amend and do pass after hearing testimony from the bill's sponsor and state agencies.

Sponsor Assemblyman Steve Yeager, who represents Assembly District 9 in southwest Las Vegas, told the committee AB 589 "establishes requirements to protect the privacy of certain information and genetic material." Yeager said the bill responds in part to what he characterized as broadened federal data-collection efforts tied to autism research and to concerns about the sale or transfer of consumer genetic samples following corporate transactions. "It is necessary that data be collected in the proper way with informed consent," Yeager said.

The bill would prohibit state agencies, local governments and their contractors or grantees from collecting autism-related data, with exceptions for provisioning benefits and required services. It would prohibit disclosure of autism-related data unless the agency obtained informed written consent, or another statutory exemption applied, and would require that disclosures under an exemption be limited to the minimum data necessary and avoid naming individuals when possible. AB 589 would also create criminal penalties: section 12 makes it a category D felony to intentionally sell or transfer a person's DNA sample or genetic information without informed consent; other provisions broaden misdemeanor and felony penalties for unauthorized acquisition, retention or disclosure of genetic-test information and genetic material, and require the State Board of Health to adopt consent procedures.

Representatives from the Nevada Division of Insurance testified in neutral and said they had worked with the sponsor on a narrow amendment to preserve the division's ability to access certain data for consumer complaints and targeted market conduct exams. Adam Plain of the Division of Insurance said the agency asked that language be added so the division could continue to handle claim disputes and examinations; Yeager said he incorporated a small conceptual amendment to ensure the division was not "inappropriately handcuff[ed]."

Committee questions focused on whether existing federal privacy protections such as HIPAA already address the concerns, and on how the bill would treat previously obtained consents. Yeager said some data sources implicated by the federal research he cited, such as data from smartwatches and fitness trackers, may fall into a gray area not clearly covered by HIPAA and that he sought state-level safeguards. He also acknowledged the possibility of litigation over retroactive limits on previously granted consents but said legislatures routinely set public policy that can affect contract expectations.

The committee approved the amendment and passed the bill out of committee. Assembly members Kasama, DeLong, Ger, Gallant and Edgeworth voted no on the motion to amend and do pass; the chair assigned the committee's floor statement to Vice Chair Wynne.

If enacted, AB 589 would require the director of the Department of Health and Human Services to be able to appoint a time-limited advisory group to study implementation, and it directs the governor's office to review state compliance with the autism-data provisions on a biennial basis.

Supporters and critics at the hearing were limited; no in-person or phone callers registered formal support or opposition during the oral testimony period. The Division of Insurance submitted written neutral testimony and worked with the sponsor on the reported amendment.

The committee record shows the bill was advanced with an amendment; the full Legislature or subsequent floor action could change provisions before final enactment.