Originally published by Peggy Keene.
What Is Genetic Privacy Law?
Genetic data has become increasingly accessible as companies such as 23andMe and Ancestry.com have enjoyed continued popularity since their emergence in the late 1990s and early 2000s. The use of genetic information culled from these kits have been used by a wide range of industries ranging from health coverage to law enforcement. In July, Florida became the first U.S. state to enact a genetic privacy law that creates new prohibitions on health insurance providers when it comes to their use of genetic data.
The Development of Genetic Privacy Law
While the U.S. government has prohibited health insurance companies from requesting genetic information when making coverage and pricing decisions since 2008, when it passed the Genetic Information Nondiscrimination Act (“GINA”), the new Florida law goes one step further by also prohibiting health insurance companies from using genetic data in regards to life, disability, and long-term care coverage decisions. Although it is important to note, however, that if an insured’s DNA results have been already included in their health records, an insurance provider may then legally access it.
The use of genetic data without explicit consent is not new. While it may be framed differently today, genetic information in the form of paternity tests have long been used to establish financial rights in uncooperative parties. Similarly, the establishment of large DNA databases that house the genetic information of convicts has long been used by law enforcement to close cold cases. The difference now, however, is that law-abiding citizens have begun to submit their genetic data by their own volition, and without any federal regulation, this rich database of genetic information may be used to for a number of unregulated reasons, including but not limited to, the genetic profiling of citizens that never consented to the analysis of their genetic data (e.g., the relatives of citizens that submitted genetic data).
Federal Guidance Lacking for Genetic Privacy Laws
Unfortunately, the federal government’s silence when it comes to genetic data privacy is unsurprising. The absence of guidance from the federal government has long been felt by privacy proponents, and many states and other countries now look to the European Union for guidance when it comes to privacy and the protection of citizens’ sensitive data. And while it is undoubtedly true that law enforcement’s access to rich databases of genetic information has led to the closure of many cold cases and even the arrest of one of the United States’ most notorious serial killers, such access without regulation is still worrying. For example, the COVID-19 pandemic recently uncovered startingly revelations about elderly accommodations, specifically that, in order to qualify for housing, many private condo associations and elderly hospices may legally require DNA test results that prove that there is no genetic predisposition to Alzheimer’s.
As such, it is unsurprising that state legislatures have begun to pass stricter regulations when it comes to genetic data. Currently, sixteen states already require informed consent whenever a third party seeks to require or obtain genetic information. Similarly, 24 states require informed consent whenever genetic information is to be disclosed. And lastly, five states have even gone as far as to define genetic information as “personal property,” which, in itself, raises interesting legal questions about the intersection of privacy law and property law.
Key Takeaways on Florida’s New Genetic Privacy Law
The passage of Florida law H.R. 1189 marks a new development in genetic privacy law and is important because:
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it prohibits insurance companies from requesting genetic information from its customers;
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it blocks insurance companies from using genetic information when deciding coverage or pricing;
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it continues a trend of states providing privacy protection to citizens in the absence of federal law; and
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it raises new legal questions about genetic data as property.
For more insights on Data Privacy, see our Technology & Data Law Overview and Health Technology Industry Legal Solutions pages.
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