Forbes reports on an effort to change the way in which companies that sell genetic tests and store patient data react to patients' requests for their personal data. Citing instances when patients had difficulty collecting their own genetic data from companies, the article points to a study addressing a frustration among cancer researchers, which is that despite the abundance of voluntary data, most is unusable due to how data sharing is enabled across platforms. In the study, researchers troubled by finding a comprehensive data set have proposed a “patient-driven cancer genome collective to directly address this need and empower data liberation and donation to advance cancer research and patient empowerment.”
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