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article imageCall to take genetic privacy more seriously

By Tim Sandle     Nov 1, 2018 in Science
Genetic data represents a powerful currency in the medical and pharmaceutical field. The problem is, a new study finds, we haven't developed clear definitions or a framework as to what "genetic privacy" means.
According to an article recently published in Nature Reviews Genetics, genetic privacy concerns the right of personal privacy in relation to the storing, repurposing, provision to third parties of a person's genetic information. Considerations around this are becoming more pressing as a result of new technologies that can streamline the high-throughput, low-cost sequencing of human genomes; and due to the value that this genetic information holds for the medical and pharmaceutical sectors.
These come together to present key ethical concerns which will shape the future of healthcare. Genetic data is collected and analyzed for a wide range of medical purposes. This includes, as noted by The Verge, genetic testing for hereditary diseases, as used by the government for identification purposes, or submitted to ancestry firms. With the latter, companies like 23andMe make money, in part, by selling anonymized genomic data (as reported by To add to this there is the collection of genetic data by pharmaceutical companies and the use of such data to develop personalized medicines.
There is also a problem with definition, which arises because it is very difficult to say where "genetic" information stops and other medical information begins. Take this quote from David Korn of the American Association of Medical Colleges, for example: "There is no feasible operational way that you can carve genetic information out of the medical record for purposes of rational legislative or regulatory oversight."
These concerns have been unpicked in a new paper from scientists based at the Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, and other institutions. The paper explores how the general public, professionals, and patients view genetic privacy. However, the answers are complex due to vagaries over definition and some cases of the use of genetic data being seen as for the social good and other cases being seen as an invasion of privacy. The scope of genetic data, it is argued, needs to become the subject of public policy with clear guidelines established.
The new paper has been published in the journal PLoS One, titled "A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States."
More about genetic data, Data privacy, Genes, Genetics
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