Who owns you?

No, I am not discussing how the NRA has bought most of our Congressman and Senators.

I am talking about our DNA and our personal information.

Right now, hospitals (at the very least, Mount Sinai [NY], Geisinger [PA], Intermountain [UT, ID, plus more]  and Mayo Clinic [MN]) and big pharma are striking deals that shares our DNA with other entities.  To me this resonates like the HeLa cells we used to use to study cancers back when I used them- when  I was in college/grad school, but those cells date back to just before I was born.

HeLa stands for Henrietta Lacks- and back on 8 February 1951, those cervical cancer cells were taken from her body and immortalized.  (Ms. Lacks was dead by that October.  And, she was never informed of this “taking” or agreed to it.  Talk about ‘eminent domain’!)  Over the years, more than 50 million metric tons of these cells have been grown and they’ve led to more than 10,000 patents.

Now, big pharma has been providing millions (ok, hundreds of millions) of bucks to garner access our patient data.  That ‘big data’ will hopefully provide them insights into diseases and let them discover new drugs.

Hospitals are telling patients that they get ‘free’ genetic testing, helping to advance science, and let them know what their disease risk may be.  Yeah, that’s a bargain. (NOT!)

These are also very different from the public genetic libraries that exist (and are being augmented) in the USA and the UK, containing the information from some 1.5 million patients.

Let’s start with the fact that hospitals don’t tell anyone that this data will be owned by ONE specific company that pays the hospital.  Intermountain made their deal with Amgen (500K patients]. Regeneron (the current sponsor the Annual Science fair) made such a deal with Mayo Clinic (100K patients) and Geisinger.  (As of now, Regeneron has sequenced the DNA of more than 550K patients through such agreements.)  (Regneron has also made a deal with BioBank- the subject of future blogs to garner 1 year exclusive access to that data bank, as they sequence the DNA.) And, guess what- those hospitals need to execute an additional agreement to get their hands back on that patient data they provided Regeneron.

Hospitals claim they strip patient identifiers from all data before they provide them to big pharma, which then sequences the DNA.  But, these firms are obtaining medical record data that may not be as ‘neutral’ as folks would want to believe- since they are able to link genetic traits and diseases.   The hospitals claim they need this arrangement because there is no public financing for such DNA sequencing.

Yet, they haven’t bothered to tell those patients who they are ‘selling’ on this idea that the data will be proprietary to a for-profit company.

Anyone else predicting a big lawsuit like there was for the HeLa cells?

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