Genetic privacy involves the concept of personal privacy concerning the storing, repurposing, provision to third parties, and displaying of information pertaining to one's genetic information.[1][2] This concept also encompasses privacy regarding the ability to identify specific individuals by their genetic sequence, and the potential to gain information on specific characteristics about that person via portions of their genetic information, such as their propensity for specific diseases or their immediate or distant ancestry.[3]
With the public release of genome sequence information of participants in large-scale research studies, questions regarding participant privacy have been raised. In some cases, it has been shown that it is possible to identify previously anonymous participants from large-scale genetic studies that released gene sequence information.[4]
Genetic privacy concerns also arise in the context of criminal law because the government can sometimes overcome criminal suspects' genetic privacy interests and obtain their DNA sample.[5] Due to the shared nature of genetic information between family members, this raises privacy concerns of relatives as well.[6]
As concerns and issues of genetic privacy are raised, regulations and policies have been developed in the United States both at a federal and state level.[7][8]
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