A National Research Council panel today proposed creating a massive data network using the private health records of patients.
What could possibly go wrong? A National Research Council panel today proposed creating a massive data research network using the private health records of patients.
As a pilot project, the report recommends sequencing the whole genomes of 1 million Americans and combining the data with medical histories to look for genetic links to disease. That may sound expensive—even if sequencing costs drop to $1000 per genome, it would cost $1 billion—but $1000 is in the range of what a routine MRI scan costs, Desmond-Hellmann pointed out. Another pilot project would use metabolomic profiles of patients’ blood to help predict which patients with insulin resistance will go on to develop type II diabetes.
Creating the network over the next decade or two shouldn’t require new funding, the report says. “This is not the Human Genome Project,” said Sawyers. “It’s taking advantage of things happening anyway and bringing them together and doing it at the point of care.” NIH needs to redirect resources and push for more long-term studies that combine research with health care, the report says. Building the network might also require a revision of patient privacy rules and an “evolution” in the public’s attitudes about allowing researchers to use their medical data. [emphasis mine]
The last sentence, highlighted by me, was also the last sentence in the article, added almost as a minor aside. Yet, it is probably the most important aspect of this story, since the right of each of us to control our personal health records is directly threatened by this proposal.
On Christmas Eve 1968 three Americans became the first humans to visit another world. What they did to celebrate was unexpected and profound, and will be remembered throughout all human history. Genesis: the Story of Apollo 8, Robert Zimmerman's classic history of humanity's first journey to another world, tells that story, and it is now available as both an ebook and an audiobook, both with a foreword by Valerie Anders and a new introduction by Robert Zimmerman.
The ebook is available everywhere for $5.99 (before discount) at amazon, or direct from my ebook publisher, ebookit. If you buy it from ebookit you don't support the big tech companies and the author gets a bigger cut much sooner.
The audiobook is also available at all these vendors, and is also free with a 30-day trial membership to Audible.
"Not simply about one mission, [Genesis] is also the history of America's quest for the moon... Zimmerman has done a masterful job of tying disparate events together into a solid account of one of America's greatest human triumphs."--San Antonio Express-News
What could possibly go wrong? A National Research Council panel today proposed creating a massive data research network using the private health records of patients.
As a pilot project, the report recommends sequencing the whole genomes of 1 million Americans and combining the data with medical histories to look for genetic links to disease. That may sound expensive—even if sequencing costs drop to $1000 per genome, it would cost $1 billion—but $1000 is in the range of what a routine MRI scan costs, Desmond-Hellmann pointed out. Another pilot project would use metabolomic profiles of patients’ blood to help predict which patients with insulin resistance will go on to develop type II diabetes.
Creating the network over the next decade or two shouldn’t require new funding, the report says. “This is not the Human Genome Project,” said Sawyers. “It’s taking advantage of things happening anyway and bringing them together and doing it at the point of care.” NIH needs to redirect resources and push for more long-term studies that combine research with health care, the report says. Building the network might also require a revision of patient privacy rules and an “evolution” in the public’s attitudes about allowing researchers to use their medical data. [emphasis mine]
The last sentence, highlighted by me, was also the last sentence in the article, added almost as a minor aside. Yet, it is probably the most important aspect of this story, since the right of each of us to control our personal health records is directly threatened by this proposal.
On Christmas Eve 1968 three Americans became the first humans to visit another world. What they did to celebrate was unexpected and profound, and will be remembered throughout all human history. Genesis: the Story of Apollo 8, Robert Zimmerman's classic history of humanity's first journey to another world, tells that story, and it is now available as both an ebook and an audiobook, both with a foreword by Valerie Anders and a new introduction by Robert Zimmerman.
The ebook is available everywhere for $5.99 (before discount) at amazon, or direct from my ebook publisher, ebookit. If you buy it from ebookit you don't support the big tech companies and the author gets a bigger cut much sooner.
The audiobook is also available at all these vendors, and is also free with a 30-day trial membership to Audible.
"Not simply about one mission, [Genesis] is also the history of America's quest for the moon... Zimmerman has done a masterful job of tying disparate events together into a solid account of one of America's greatest human triumphs."--San Antonio Express-News
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