Genetic Test Firm to Put Customers’ Data in the Public Domain

Ambry Genetics, a leading genetic testing company, reportedly is planning to place NON-IDENTIFIABLE genetic information from 10,000 of its customers it has tested into the public domain, a move the company says could make a large trove of data available to researchers looking for genes linked to various diseases. Since it is non-identifiable information, there should be no privacy issues involved.

Pooling data from many people is considered crucial to finding the genetic elements that contribute to illnesses. AmbryShare will not contain the actual exome of each person, because that would pose a risk to patient privacy. Rather it will contain aggregated data on the genetic variants. For example, a researcher could look up how frequently a particular mutation occurs among the 10,000 people. Ones that occur frequently in these 10,000 patients, but not among healthy people, could raise the risk of developing those cancers.

Pooling data from many people is considered crucial to finding the genetic elements that contribute to illnesses.

You can read more in an article by Andrew Pollack in the New York Times at http://goo.gl/isDdk7.

My thanks to newsletter reader Jay Ingalls for telling me about this story.

9 Comments

Thin end of the wedge. This data must be worth millions to health insurance companies, . Down the track they may well insist on genetic testing before insuring someone. Identifying those more at risk of developing ‘xyz disease’ (according to data extracted from non identifiable genetic info) will have much higher premiums. Just a thought..
Rosie

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When someone buys their DNA test, does one also have to sign that this kind of use is permitted? What of those whose data are part of those collected from the earliest batch of customers? What did the agreed rules say then? I approve of the usage, but I’m wondering how this would play out. If the FBI wanted to know who a certain DNA segment represented, would that detail be available?

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    Depends on the company. In a reputable company, you have the right to opt out of this kind of thing. A huge problem with this information is nothing will come of it in terms of curing diseases. Too much money in it for Big Pharma to use it for that purpose. Another problem is assuming that a specific gene or genes lead to condition Z. In some cases, it will be true, but in others it will not.

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    In theory, no the DNA wouldn’t be used by the FBI. Contrary to the Legal Genealogist’s claims otherwise, autosomal DNA used by the major DNA companies is tons better than CODIS for determining if a person’s DNA matches the crime scene DNA. With several hundred thousand SNPs from autosomal DNA, the odds of it matching incorrectly are a lot lower than the odds of CODIS at 13 or 20 markers.

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I and some of my family have tested with them for the family genetic disease most of us have. I signed papers with the research hospital but not with Ambry Genetics. So I’m not sure if I like this. I will have to look at the papers to see what they say. I inherited a dominant gene disease from my father and pasted it to my daughter.

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First, if we have a single payer health care, like Canada, we won’t need to worry about evil Insurance companies.
Second, the kind of markers used by law enforcement agencies are different than the ones used in health research.
I have too many friends affected by genetic diseases not to be willing to share if it will help.

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    If we had a single payer system, it’ll be the evil government poking around in our DNA. Nothing wrong with that. Or with waiting for an extended period for elective surgery.

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The big question is, for me, can law enforcement or government get a court order to see the identity of the individual if they or their family (distant or close) match a case DNA?

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