Genetic privacy
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.
[5] Due to the shared nature of genetic information between family members, this raises privacy concerns of relatives as well.
[11][12][13] Additionally, gene sequences are passed down with a regular pattern of inheritance between generations, and can therefore reveal one's ancestry via genealogical DNA testing.
Additionally with knowledge of the sequence of one's biological relatives, traits can be compared that allow relationships between individuals, or the lack thereof, to be determined, as is often done in DNA paternity testing.
[21] While accessible genomic data has been pivotal in advancing biomedical research, it also escalates the possibility of exposing sensitive information.
[3][18][19][22] One study demonstrated re-identification by piecing together genomic data from short tandem repeats (e.g. CODIS), SNPallele frequencies (e.g. ancestry testing), and whole-genome sequencing.
[18][25] Additional privacy concerns, related to, e.g., genetic discrimination, loss of anonymity, and psychological impacts, have been increasingly pointed out by the academic community[25][26] as well as government agencies.
[27] Since 2018, law enforcement officials have been harnessing the power of genetic data to revisit cold cases with DNA evidence.
[28] Suspects discovered through this process are not directly identified by the input of their DNA into established criminal databases, like CODIS.
[28][29] Officers can then track the newly identified suspect in person, waiting to collect discarded trash that might carry DNA in order to confirm the match.
[6] Much like donors of biological samples in cases of genetic research,[30][31] criminal suspects do not retain property rights in abandoned waste; they can no longer assert an expectation of privacy in the discarded DNA used to confirm law enforcement suspicions, thereby eliminating their Fourth Amendment protection in that DNA.
[6] Additionally, the genetic privacy of relatives is likely irrelevant under current caselaw since Fourth Amendment protection is “personal” to criminal defendants.
[34] This has led to calls for policy-makers to establish consistent guidelines and best practices for the accessibility and usage of individual genomic data collected by researchers.
[41][42] According to the National Human Genome Research Institute, forty-one states have enacted genetic privacy laws as of January 2020.
[51] Florida passed House Bill 1189, a DNA privacy law that prohibits insurers from using genetic data, in July 2020.
