The National Institutes of Health recently launched the All of Us Research Program to create one of the largest, richest public resources for biomedical research in human history. Its mission is to accelerate medical breakthroughs that personalize prevention, treatment, and care for all Americans. As the director of this unprecedented program — and as a cancer survivor, patient advocate, and participant in more than a dozen research studies — I want to share how we are safeguarding participant confidentiality and personal data.
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[O]ur key privacy protections include removing obvious identifiers from data, encrypting all data, and storing it within secure commercial cloud platforms. No vendor, consortium partner, or researcher can copy or sell this data.…
We use best-in-class security technologies and continuously test and monitor our systems, even with innovative approaches like using friendly “white hat” hackers to attack our systems and help improve any weaknesses they find.
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I trust our systems with my health data, knowing full well that no system is invulnerable. But to me, that small risk is vastly outweighed by the huge potential benefits from All of Us. Perhaps we will learn to prevent chronic pain, find better ways to treat or even prevent diabetes, slow or stop dementia, or find “first time” cures for new cancer patients.
Read full, original post: I handed over my genetic data to the NIH. Here’s why you should, too
