To learn what is already known about these views, we conducted a systematic review, which ultimately analyzed 53 studies involving the perspectives of 47,974 participants on real or hypothetical privacy issues related to human genetic data.
doi: 10.7554/eLife.51810 The direct-to-consumer genetic testing industry has grown rapidly in the past few years, to the extent that the companies offering such tests now hold a large proportion of all the human genetic data ever generated ( Regalado, 2019 ). Previously, she freelanced as a reporter, audio producer, and fact-checker. eLife 9 :e51810. James Watson, a discoverer of DNA’s double helix shape, had his genes sequenced and made the information public — …
However, research has shown that concerns about genetic privacy are disproportionate to known instances of information misuse. Attacks on genetic privacy via uploads to genealogical databases. Thank you for submitting your article "Attacks on genetic privacy via uploads to genealogical databases" for consideration by eLife. Your article has been reviewed by three peer reviewers, and the evaluation has been overseen by Magnus Nordborg as the Reviewing Editor and Mark McCarthy as the Senior Editor. Genetic privacy likely will remain on lawmakers' agendas in coming years as direct-to-consumer testing gain in popularity. The majority of states and the U.S. government have passed regulations protecting genetic information. During the past 10 years, the number of genetic tests performed more than tripled, and public concern about genetic privacy emerged. Even fragments of genetic information can compromise privacy. Megan Molteni is a staff writer at WIRED, covering biotechnology, public health, and genetic privacy. The rapid development of modern techniques of human genome analysis, for both research and diagnostic purposes, entails a wide variety of problems, which have fallen and remain far behind the question of technological capabilities. Concerns about genetic privacy affect individuals’ willingness to accept genetic testing in clinical care and to participate in genomics research. BY PETER J. PITTS -- HIPAA was passed when genetic testing was just a distant dream on the horizon of personalized medicine. These circumstances raise valid concerns about compromised genetic privacy in many areas of life. But today, that loophole has proven to be a cash cow.
Keywords: Confidentiality, genetic counseling, privacy.
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