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.
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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.
Readers!
Every February I run a fund-raising drive during my birthday month. This year I celebrate my 72nd birthday, and hope and plan to continue writing and posting on Behind the Black for as long as I am able.
I hope my readers will support this effort. As I did in my November fund-raising drive, I am offering autographed copies of my books for large donations. Donate $250 and you can have a choice of the hardback of either Genesis: the Story of Apollo 8 or Conscious Choice: The origins of slavery in America and why it matters today and for our future in outer space. Donate $200 and you can get an autographed paperback copy of either.
Please consider supporting my work here at Behind the Black. My analysis of space, politics, and culture, taken from the perspective of an historian, is almost always on the money and ahead of the game. For example, in 2020 I correctly predicted that the COVID panic was unnecessary, that the virus was apparently simply a variation of the flu, that masks were not simply pointless but if worn incorrectly were a health threat, that the lockdowns were a disaster and did nothing to stop the spread of COVID. Every one of those 2020 conclusions has turned out right.
Your help allows me to do this kind of intelligent analysis. I take no advertising or sponsors, so my reporting isn't influenced by donations by established space or drug companies. Instead, I rely entirely on donations and subscriptions from my readers, which gives me the freedom to write what I think, unencumbered by outside influences.
You can support me either by giving a one-time contribution or a regular subscription. There are four ways of doing so:
1. Zelle: This is the only internet method that charges no fees. All you have to do is use the Zelle link at your internet bank and give my name and email address (zimmerman at nasw dot org). What you donate is what I get.
2. Patreon: Go to my website there and pick one of five monthly subscription amounts, or by making a one-time donation.
3. A Paypal Donation or subscription:
4. Donate by check, payable to Robert Zimmerman and mailed to
Behind The Black
c/o Robert Zimmerman
P.O.Box 1262
Cortaro, AZ 85652
You can also support me by buying one of my books, as noted in the boxes interspersed throughout the webpage or shown in the menu above.
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