Intermountain Healthcare to Build Global DNA Registry with 23andMe, MyHeritage, and AncestryDNA Data

Genealogy and DNA continue to be mixed together in an attempt to prolong human lives. The following is an announcement from the Intermountain Medical Center Heart Institute:

A team of researchers from Salt Lake City-based Intermountain Medical Center Heart Institute plan to build a global DNA database of genetic test results and EHR histories, Intermountain Healthcare announced March 1.

The project, dubbed the GeneRosity Registry and funded by the Intermountain Research and Medical Foundation, will compile data from adults who have already purchased direct-to-consumer genetic tests from commercial sites like AncestryDNA, MyHeritage or 23andMe. These participants will have the option to voluntarily upload raw and unprocessed genetic test results to the project’s website.

Along with genetic test results, the researchers will also request medical histories from participants, including health information about himself or herself and three generations of relatives, including children, siblings and parents. The researchers will store this genetic and historical information in a secure database, which may only be accessed by those involved in the GeneRosity Registry project.

The GeneRosity Registry will serve as a research resource to inform future studies. For example, researchers may use data collected for the project to identify genetic markers that determine a patient’s risk of developing select health conditions.

“We’ll be able to use the information people submit to validate new genetic and disease findings, discover new genetic mutation and genetic profiles, and drive future studies,” Stacey Knight, PhD, a cardiovascular and genetic epidemiologist at the Intermountain Medical Center Heart Institute, said in a March 1 statement.

7 Comments

So, this institute is acquiring DNA results from consumer sites which will be identified by name. I hope the consumer sites will notify their customers in a meaningful way (like an email and/or snail mail) and provide an opportunity to opt out of having their results submitted.

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    It is noted that the only gen testing company which tests all three dna types: ydna, .mtdna and atdna, was not mentioned. That is Familytreedna, in Houston. We are told that MyHeritage has it’s atdna done by FamilyTree dna. We do not not know what their contract specifies what those conditions are re : privacy. We have been assured by Ftdna that our results are completely private, and will never be sold.

    You can bet your britches that the insurance companies are chomping at the bit to get a hand on all that DNA data with identities attached. They will do anything to improve that bottom line.We saw this coming when we elected to use the Houston company.
    Read everything thoroughly when asked for consent to release your DNA results

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    The DNA is not coming directly from the testing companies. It’s uploaded by an individual who wants to contribute to the research. There’s more information on the Intermountain website

    https://intermountainhealthcare.org/services/heart-care/heart-institute/research-and-clinical-trials/research-areas-and-clinical-trials/genetic-and-molecular-research/generosity/

    I suspect Family Tree DNA is not included as an option because they deliberately redact a few thousand medically relevant SNPs from their raw data download.

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There is absolutely no way that I would share health information about myself and three generations of relatives, including children, siblings and parents. Do they really think people are naive enough to do this?

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    Intermountain Healthcare is well known in Utah and Idaho for exceptional service for women, children (Primary Children Hospital) and many clinics to keep costs low. They have been around for over 100 years now. Also the same now in cooperation with other not for profit hospital groups elsewhere to produce low cost generic drugs needed for treatments in light of greedy drug companies.
    They have been involved in genealogy contributed through Family History Library, tracking down descendants with genetic disorders.
    This DNA enhance further to find more difficult health problems. I already contributed my LivingDNA to them, having already discovered certain health issues I have.
    Now, do you have permission from children, siblings and parents to this? They won’t accept their DNA with permission and authorization directly.

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Given the current legal corporate mandate to make money, I see no way for this remain altruistic. I am afraid that in our need to know more about each other, I have only entrusted my information to FTDNA because they promise they won’t sell our data, but I have become worried about the future-not today’s promises. Promises are only as good as the next corporate merger, or change of CEO. I think that there is reasonable basis for concern.

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If western medical research is going to progress, genetic data is necessary. The privacy issue was raised when the IRS went digital; again when fingerprints were proven reliable; again when DNA testing in crimes was approved; again when public cameras were put in. And it will be raised again. Release of personal DNA should be a personal decision. There will be enough people giving permission for research to proceed and allow all our children and grandchildren a better life.

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