Bill regulating collection of genetic data advances out of state Senate committee

The Genetic Information Privacy Act is designed to protect consumers who wish to send their DNA for genetic testing

Story update from March 23, 2022:

FRANKFORT, Ky. (WTVQ) – The Senate Health and Welfare Committee took steps Wednesday to help ensure data gathered by direct-to-consumer genetic testing services remains private.

Sponsored by Republican Rep. Danny Bentley, of Russell, House Bill 502 would put consumers in control of their genetic data from start to finish when they use genetic testing services.

Bentley said the state legislation is needed to strengthen the federal regulations and rules laboratories follow, and it is meant to protect Kentuckians by putting up “guardrails.” The measure is known as the Genetic Information Privacy Act.

“DNA theft can result in exposure of medical information such as AD (Alzheimer’s disease) or predisposition to cancer,” he said, adding that it can also reveal information about your family relations. “We need to protect that for all Kentuckians.”

The measure defines a biological sample as items such as tissue, blood, urine or saliva known to contain DNA.

The legislation calls for consumers to have a process to access their genetic data, delete their account and genetic data, and request and obtain the destruction of their biological samples.

It would also restrict how law enforcement personnel use DNA records that are voluntarily submitted to eliminate suspects.

Ritchie Engelhardt, Head of Government Affairs at Ancestry, said the bill has had broad stakeholder and bipartisan support in the states where similar legislation has already passed.

“That includes Arizona, California, Utah and Wyoming,” he said.

Similar legislation was taken up at The Council of State Governments’ meeting last fall, and the organization opted to include it in its state bill book on model legislation.

Republican Sen. Ralph Alvarado, of Winchester, said he is in favor of the bill because it’s good legislation and it’s important to protect the state’s citizens.

The measure was approved with a 10-0 vote. It will now go to the full Senate for consideration.

 

Original story below from March 14, 2022:

FRANKFORT, Ky. (WTVQ) – 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.

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