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Mar 15, 2022

Bill Regulating Collection of Genetic Data Passes Kentucky House

The following is a press release issued by the Kentucky House of Representatives:

FRANKFORT, Ky. – The Kentucky House on Monday passed HB 502, also known as the Genetic Information Privacy Act.

The bill is meant to protect consumers who wish to send in their DNA for genetic testing to companies like ancestry.com and 23&Me. The legislation is sponsored by Republican Rep. Danny Bentley, of Russell.

“This bill is for the future. Many companies offer direct consumer testing through the internet, and it has become widely available. A person can order a kit, send in a cheek swab to the company, and receive a genome scan. It is usually not under a doctor’s supervision so there are no safeguards for Kentuckians. Information is easily obtainable by thefts, and with that information, a thief gains control of that person’s genetic information. People have a right to privacy when it comes to their genetic information, just like they have that right for their medical information, and this legislation puts those necessary safeguards in place,” said Rep. Bentley.

Rep. Bentley said the measure would do two things to ensure the safety of a person’s genetic information. It would regulate the collection, use, and disclosure of genetic data. It would also create a civil cause of action for violations of the prohibitions to be brought by the Attorney General.

The bill’s primary co-sponsor, Republican Rep. Steve Sheldon, of Bowling Green, added “It is extremely important that we regulate the collection of people’s genetic information because it could be harmful if that information is stolen or leaked. This is a growing private industry and we want to ensure that we are protecting the privacy of the citizens of the commonwealth”

The bill is now heads to the Senate for consideration.