Blackstone to Acquire Ancestry®, Leading Online Family History Business, for $4.7 Billion

[Fc1345linville]

https://www.blackstone.com/press-releas ... 7-billion/

This bit of activity on Wall St. was a minor story to many, but it got me to thinking what exposure one has when Ancestry.com, 23andme or some other testing group is acquired by a private equity firm. These financial giants exist for one reason: to make profits, and they are very good at that. But I wonder what Blackstone will be willing to do in order to make money? Presumably they will market their database to interested buyers, hopefully separating DNA data from the contact info of the people who had the tests made.

I did a little google searching on privacy laws regarding use of DNA databases. I found this, from "Wired". Apparently in the US there are federal laws that have enabled wide distribution of the massive DNA databases for scientific use, which is great. But as the article states, "our laws are patchy and incomplete."

https://www.wired.com/story/the-us-urge ... vacy-laws/

[JuttaH]

Yeah, the US government basically gave tech companies carte blanche to do as they please-- and this will bite us all, including those who helped push this legislation.

[NF52]

https://www.blackstone.com/press-releas ... 7-billion/...
I did a little google searching on privacy laws regarding use of DNA databases. I found this, from "Wired". Apparently in the US there are federal laws that have enabled wide distribution of the massive DNA databases for scientific use, which is great. But as the article states, "our laws are patchy and incomplete."

https://www.wired.com/story/the-us-urge ... vacy-laws/

Yeah, the US government basically gave tech companies carte blanche to do as they please-- and this will bite us all, including those who helped push this legislation.

Thanks for posting this, "Fc", and for raising the important questions about the use of our genetic data by private equity firms. Less than one month old, this Sept 1. headline brings some hope: California Legislature Passes Bill to Establish the Genetic Information Privacy Act, Pending Governor’s Signature Washington State is considering a similar bill.

JuttaH, Ancestry apparently has annual revenue of $1 billion per year and 3 million paid subscribers, so that must look like low-hanging fruit to Blackstone, a private equity firm. It doesn't appear that the Federal government's approval is required; the previous owners are private equity firms, one of which will retain a 25% share https://medcitynews.com/2020/08/blackst ... questions/

The 2013 WIRED story led to changes at NIH, described on the website of the NIH's National Human GenomeResearch Institute . BTW, they also have a detailed section on the Genetic Information Nondiscrimination Act of 2008 GINA

Privacy In Genomics.
(Note: I highlighted sections that seem key.)

To advance genomics research, NIH houses a number of databases through which researchers can share de-identified genomic data... it is important to minimize the possibility that any research participants are identified. Indeed, a study published in 2013 demonstrated that it is possible to re-identify research participants using genomic data from one such database alongside genealogical databases and public records. NIH therefore controls access to sensitive or potentially identifiable information held in these databases to ensure that the privacy of the research participants is respected. (See Genomic Data Sharing Policy below.)

HIPAA covered entities may not use or disclose protected health information that is genetic information for underwriting purposes. There are no such restrictions on the use or disclosure of PHI [Personal Health Information] that has been de-identified...

PRIVACY IN SOCIETY: USE IN LAW ENFORCEMENT:...There is no federal law prohibiting surreptitious [DNA] testing. Currently about half of the states in the U.S. have laws or regulations governing genomic privacy and illegitimate uses of genomic data. However, there is great variation in these laws. "...

PRIVACY PROTECTIONS:...NIH's interpretation is that the release of genomic information datasets in response to a FOIA [Freedom of Information Act] request would be an unreasonable invasion of personal privacy. However, this interpretation has yet to be tested in the courts. NHGRI is exploring the potential impact of a clear legal exemption of genomic information under FOIA that would not depend on the court's interpretation of genomic information as warranting privacy.

We can all encourage state and federal legislation that will expand our rights to privacy for our genetic and health-related information. Doing so would also support the ability of researchers to find the causes of, and treatments for, diseases and health conditions ranging from COVID-19 to premature birth to Alzheimer's and other dementias.