Questions continue to swirl about the private genetic data of millions of customers of 23andMe.After the company's bankruptcy filing, cybersecurity experts say that information of more than 15 million customers is very likely to be sold off to the highest bidder in a court-supervised sale process.Ten states have privacy laws to protect genetic information, but Pennsylvania is not among them. However, some new movement in Harrisburg shows that could be changing.State Reps. Emily Kinkead and Brian Munroe, both Democrats, announced they plan to introduce new legislation to establish a genetic privacy law like other states have.It is called "The Genetic Materials Privacy and Compensation Act.""We don't have any protection over our genetic data and no specific ownership over our DNA," said Kinkead, who represents the 20th House District in Allegheny County. "I thought it was really important that we actually do something about it."Kinkead says personal data like DNA should not be treated as a corporate asset that is sold to the highest bidder, and that situations like 23andMe's bankruptcy filing are a wake-up call that the genetic data of Pennsylvanians will remain vulnerable to exploitation until the law is strengthened.If passed into law, it would require companies that collect genetic information, like 23andMe and Ancestry, to allow people to delete their information from the database -- guaranteed.It would also force companies in the event of a sale to notify people that the sale was happening, and allow customers to make sure their information isn't included.If they don't opt out of the sale, the company would then be forced to provide compensation in the sale of that genetic data."You inherently own your DNA. That is part of who you are. It is the building blocks of you as a person," Kinkead said. "Every person should have the ability to decide how that information gets used and to be able to protect that from corporations, from bankruptcies, from insurance companies accessing that information to potentially limit what your insurance coverage could be."This effort is also inspired by Henrietta Lacks, an African-American woman whose cancer cells were, without her knowledge or consent, taken during a biopsy in the 1950s. The genetic material taken from her cells subsequently became one of the most important tools in scientific research.The memo states, "While Ms. Lacks' genes helped save countless lives through medical and scientific research, this situation raises serious concerns about the privacy and use of DNA.""Henrietta Lacks' family still has never received any compensation. It is a real injustice," Kinkead said. "It's something that we can prevent from happening again."Kinkead even tried introducing a similar piece of legislation in 2023, but it didn’t gain traction. She believes that with the 23andMe bankruptcy bringing genetic privacy back into the spotlight, she can garner bipartisan support to pass it this time."Democrat or Republican, I think we all really understand the danger of allowing companies to own people's genetic building blocks," Kinkead said. "If this doesn't go anywhere, I think the real issue is just a lack of understanding of the importance of the issue."The 8 On Your Side team is keeping you informed in the meantime about how you can delete your data from 23andMe. You can find a step-by-step guide here.
HARRISBURG, Pa. —
Questions continue to swirl about the private genetic data of millions of customers of 23andMe.
After the company's bankruptcy filing, cybersecurity experts say that information of more than 15 million customers is very likely to be sold off to the highest bidder in a court-supervised sale process.
Ten states have privacy laws to protect genetic information, but Pennsylvania is not among them. However, some new movement in Harrisburg shows that could be changing.
State Reps. Emily Kinkead and Brian Munroe, both Democrats, announced they plan to introduce new legislation to establish a genetic privacy law like other states have.
It is called "The Genetic Materials Privacy and Compensation Act."
"We don't have any protection over our genetic data and no specific ownership over our DNA," said Kinkead, who represents the 20th House District in Allegheny County. "I thought it was really important that we actually do something about it."
Kinkead says personal data like DNA should not be treated as a corporate asset that is sold to the highest bidder, and that situations like 23andMe's bankruptcy filing are a wake-up call that the genetic data of Pennsylvanians will remain vulnerable to exploitation until the law is strengthened.
If passed into law, it would require companies that collect genetic information, like 23andMe and Ancestry, to allow people to delete their information from the database -- guaranteed.
It would also force companies in the event of a sale to notify people that the sale was happening, and allow customers to make sure their information isn't included.
If they don't opt out of the sale, the company would then be forced to provide compensation in the sale of that genetic data.
"You inherently own your DNA. That is part of who you are. It is the building blocks of you as a person," Kinkead said. "Every person should have the ability to decide how that information gets used and to be able to protect that from corporations, from bankruptcies, from insurance companies accessing that information to potentially limit what your insurance coverage could be."
This effort is also inspired by Henrietta Lacks, an African-American woman whose cancer cells were, without her knowledge or consent, taken during a biopsy in the 1950s. The genetic material taken from her cells subsequently became one of the most important tools in scientific research.
The memo states, "While Ms. Lacks' genes helped save countless lives through medical and scientific research, this situation raises serious concerns about the privacy and use of DNA."
"Henrietta Lacks' family still has never received any compensation. It is a real injustice," Kinkead said. "It's something that we can prevent from happening again."
Kinkead even tried introducing a similar piece of legislation in 2023, but it didn’t gain traction. She believes that with the 23andMe bankruptcy bringing genetic privacy back into the spotlight, she can garner bipartisan support to pass it this time.
"Democrat or Republican, I think we all really understand the danger of allowing companies to own people's genetic building blocks," Kinkead said. "If this doesn't go anywhere, I think the real issue is just a lack of understanding of the importance of the issue."
The 8 On Your Side team is keeping you informed in the meantime about how you can delete your data from 23andMe. You can find a step-by-step guide here.
