If you were asked: “would you agree to your DNA being made available for the world to see”, how would you answer?
I would guess that most of us would say “no”.
Yet, with or without our authorisation and regardless of jurisdiction, this is where we are heading towards; whether or not we decide to take a DNA test.
Salami Technique
As often happens with technology, the sum of small, seemingly reasonable actions, will amount to a vast, systematic, universal breach of privacy.
Here is what is going on. As many of you know, it is possible to get some kind of DNA report, most often used to find relatives. According to an MIT Technology Report, 29 million people worldwide have taken an “at-home ancestry test”. As prices for these tests fall, this figure is destined to rise.
What is crucial, is that people are willingly giving their information, assuming their data will be protected. As mentioned earlier, the benefits are to find other relatives who in turn consent to be made aware of more or less close family ties.
In addition, who would argue against using DNA to resolve legal and law enforcement cases?
GED set and Match
This is where things start to get worrying for the wider public, our legal identity (name, gender, location) may be match to our DNA via a publicly available database called GEDMatch.
GEDMatch allows anyone to upload one’s DNA and make this available to anyone for a maximum of $10 per month.
In their privacy policy, GEDMatch states among other things that
GEDmatch Collection and Use of Information
When you register on GEDmatch, we collect your name, an optional alias, and email address to process your registration. Once you are registered, you can provide other personal information such as your sex, Y-DNA or mtDNA haplogroup, genetic sequence/information, Genealogy data, and/or Tier1 payment information. GEDmatch will only collect your personal information if you provide it to us voluntarily. If you are located outside the United States, you consent to the storage, processing, and transfer of your personal information outside your country.
I’m Gonna GED You.
Recently the Associated Press reported the arrest of a man who for 43 years eluded authorities. Indeed, GEDmatch has been instrumental in solving more than 50 similar case. The technique used by law enforcement authorities revolves around getting a suspect’s DNA from the crime scene and matching it against GEDMatch database. Once this is done, a shortlist of living relatives is produced, quickly narrowing down who the suspect might be and where he might be living.
The ethical implications are myriad. One can simply think of the insurance industry and the matter of pre-existing conditions. Even if you do not consent to sharing your DNA, indeed, you do not have to be asked, if your relatives have submitted their DNA it wouldn’t be outlandish to conclude that in the near future, your chances of contracting this or that disease to be inferred from the DNA of your relatives.
Balsamo, Michael (April 27, 2018). “Genealogy site didn’t know it was used to seek serial killer”. Phys.org. Associated Press. Retrieved May 22, 2018.
^ Brown, Kirsten (April 12, 2019). “A Researcher Needed Three Hours to Identify Me From My DNA”. Bloomberg Business Week. Retrieved April 15, 2019.
^ Jones, Natalie. “MD Bill Seeks to Prohibit Using DNA Databases to Solve Crime”. NBC4 Washington. Retrieved March 9, 2019.
^ Pauly, Madison (March 12, 2019). “Police are increasingly taking advantage of home DNA tests. There aren’t any regulations to stop it”. Mother Jones. Retrieved March 14, 2019.
^ Aldhous, Peter (May 19, 2019). “This Genealogy Database Helped Solve Dozens Of Crimes. But Its New Privacy Rules Will Restrict Access By Cops”. BuzzFeed News. Retrieved May 20, 2019.
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