Countries are strengthening genetic privacy


If you ever Spit into a plastic tube or wipe your cheeks and mail your saliva to understand your ancestry or health risks. You might think that the company that analyzes your DNA is legally required to keep your genetic data confidential. But you are wrong.

The Health Insurance Portability and Accountability Act, or HIPAA, protects personal medical information processed by doctors, hospitals, and health insurance companies. This applies to genetic tests ordered by your doctor, but not to tests that you can buy online directly from companies such as 23andMe and Ancestry, as these kits are not considered medical tests. Therefore, these companies are largely in a legal gray area. The company formulates its own privacy policy, and the customer agrees to these policies when purchasing the kit, but the company can change these policies at any time.

This is a problem, because genetic data can reveal all kinds of sensitive information about you-your Race, Your family connect, Even the possibility that you have Alzheimer’s disease or certain cancers.Law enforcement officers are increasingly using consumer genetic databases Investigating violent crime.

But more and more states are passing genetic privacy laws to close these gaps. California became the newest state on October 6, when Governor Gavin Newsom signed the bill. Genetic Information Privacy Act, Which limits the data collected by direct-to-consumer DNA testing companies. SB 41 came into effect in January and requires customers to express their consent before using their genetic data for scientific research or sharing with third parties. If customers agree to use their data for research, the company must provide an easy way for them to opt-out at any time.

“Consumers have an inherent right to privacy,” said Maureen Mahoney, a technology and privacy policy analyst at Consumer Reports, a consumer-rights non-profit organization lobbying for the California Act. “People don’t want information about their test results to be made public.”

Mahoney said that privacy advocates want to ensure that DNA testing companies cannot hide the terms of agreement in long-term service agreements.New California law prohibits company use “Dark Pattern”-Deceptive practices that use pop-up windows and other network elements to trick consumers into agreeing.

It also requires the company to provide customers with a clear and simple way to close their accounts and delete their DNA data from the company’s database, if they wish. In addition, the company must destroy its biological samples within 30 days of the customer’s request.

Utah A similar law was enacted in March, and then Arizona In April. The laws in both states deal with consent issues, data security, notice of privacy practices, and the right of individuals to delete their genetic data and destroy their biological samples.

Advocates say Need such protection Because the US privacy law was enacted before the advent of home genetic testing. HIPAA was promulgated in 1996.The Human Genome Project did not disclose First draft of our genetic code Until 2003.Five years later, Congress recognized that genetic data may be used to discriminate against individuals, and passed Genetic Information Non-Discrimination Act (Gina). The law prohibits employers and health insurance companies from prejudicial treatment based on personal genetic information. But this does not prevent other entities (such as life insurance companies, mortgage lenders, or schools) from refusing to provide services based on a person’s genetic makeup.



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