NIH wants 1 Million Americans to Contribute to a New Pool of Genetics Data

Starting this spring, Americans across the country will be invited to contribute to a massive new pool of genomic information being assembled by the government, a project that represents the most ambitious effort yet to capitalize on the promising new frontier of gene-based medicine.

Three years after the National Institutes of Health (NIH) first announced its Precision Medicine Initiative — subsequently redubbed “All of Us” — the agency’s director, Francis Collins, says the large-scale project is ready to expand beyond its initial testing stages. In early spring, on a date yet to be announced, NIH is planning a nationwide launch to start enrolling what it hopes will eventually be as many as 1 million participants.

The program’s aim is to essentially compile the world’s largest genetic library intended to be widely available to scientists and researchers. This rich collection of DNA information is designed to assist scientists and researchers exploring the genetic basis for all sorts of health conditions — and those working to develop targeted therapies calibrated to an individual’s genetic makeup instead of the traditional one-size-fits-all approach.

You can read the full story by Paige Winfield Cunningham in the Washington Post at: http://wapo.st/2FSyUoM.

NOTE: Most genealogists who have had their DNA tested have only had ancestry-related information extracted. While the National Institutes of Health probably will also be interested in those markers, the primary purpose of the new Precision Medicine Initiative is to help consumers prevent or mitigate serious diseases such as diabetes or breast cancer. As such, many additional markers will be needed. In other words, the typical genealogy DNA test is not able to supply all the information the NIH is seeking.

7 Comments

What is the intended policy be to protect individual security short and long term. Can politics influence outcome.
Thank you

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Always leery when the government gets involved. Primarily with their inability to maintain the privacy of data they collect. I’ve been a big supporter of DNA testing for genealogy research but I don’t think I can support this. No matter how good there intentions are.

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I am a big supporter of genetic testing and medical advances based on scientific evidence which this project is purported to be. But I am old enough to remember Hitler’s experiments thus my antenna went up as I began reading about this project. I’m sure that I will not be the only skeptic when it relates to a government project involving millions of subjects no matter how beneficial the intent. It does not help to ease my suspicions when I’m seeing a president who cannot be trusted and who has some very loyal followers who appear not to be too independent in their thinking. I doubt that I will volunteer!

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I have purchased dna testing from 23&me to include the medical reports. That said I would never participate in a NIH data base to include this same or more data. As long as Donald Trump is president and consistently threatens the privacy of Americans I would not participate…promises to not share or use data for other purposes are insufficient as the President lies on the average of 5-6 times a day…as they say no way Hosea.

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I think concerns about malevolent uses of this data are unfounded and short-sighted. This is a population-type study that will not be evaluating individuals. It has the potential to vastly expand our ability to predict and prevent disease. I will have no hesitation in volunteering for the study, and encourage others to do so.

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Carol Eastman Hubbard January 22, 2018 at 7:02 am

I will not be fooled by our government into thinking it is for medical reasons. No, don’t believe it for one second. The government has been working on this project for a long time.

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I too remember Hitler and Mengala. There is no way I want ANY government to be able to single out a group of people for genocide (please note the root of this word). Those that want to ignore history and not learn from it WILL repeat it.

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