From the press release: From the moment he is handed a possibility of making the first alien contact, Saunders Maxwell decides he will do it, even if doing so takes him through hell and back.
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.
Every July, to celebrate the anniversary of the start of Behind the Black in 2010, I hold a month-long fund-raising campaign to make it possible for me to continue my work here for another year.
This year's fund-raising drive however is more significant in that it is also the 10th anniversary of this website's founding. It is hard to believe, but I have been doing this for a full decade, during which I have written more than 22,000 posts, of which more than 1,000 were essays and almost 2,600 were evening pauses.
This year's fund drive is also more important because of the growing intolerance of free speech and dissent in American culture. Increasingly people who don't like what they read are blatantly acting to blackball sites like mine. I have tried to insulate myself from this tyrannical effort by not depending on Google advertising or cross-posts Facebook or Twitter. Though this prevents them from having a hold on me, it also acts to limit my exposure.
Therefore, I hope you will please consider donating to Behind the Black, by giving either a one-time contribution or a regular subscription, as outlined in the tip jar below. Your support will allow me to continue covering science and culture as I have for the past twenty years, independent and free from any outside influence.
Regular readers can support Behind The Black with a contribution via paypal:
If Paypal doesn't work for you, you can support Behind The Black directly by sending your donation by check, payable to Robert Zimmerman, to
Behind The Black
c/o Robert Zimmerman
Cortaro, AZ 85652