Companies that test your DNA don’t own you, but they own the right to distribute their data. A photographer doesn’t own what he takes a picture of, though the picture is his or hers. And others can buy the genetic info and draw conclusions and possibly take actions… I don’t like the idea of insurance rates being possibly affected.
Any of you ever see Gattica? Awesome movie. Anyhow, just ordered a genetic test kit. First I am doing the National Geographic one, then will upload into some other databases… Then will probably want to try 23 and me. I am not worried, but I get this is a serious issue worthy of discussion. I think this amount of knowledge and information gained from this type of testing over the next several decades is really going to help our understanding of genetics. I am also excited how it also helps our understanding of history. It is also helpful in the solving of crimes, like the Golden State killer for one, though the DNA tracking is creepy. See Gattica. In that dystopian future genetic testing is constant, matter of course, and used to identify everyone, and decide what their jobs should be. Creepy.
As a Canadian, you are not protected because the United States bans a practice. Your government would have to enact its own protections.
The EU makes an art form of this, particularly in agriculture: American food safety practices are far more lax than Europe’s, so as a result, America’s food exporters can sell their goods in the U.S. but not in Europe unless they meet the higher EU standard.
The same with software, social media, and other protections against hacking. American companies peddling their digital wares overseas must meet the standards of each nation in order to sell their goods to those nations’ citizens.
As a result, EU standards make everything safer because American companies do not want to make the product for two different standards. So they make it for the higher, EU, standard and Americans win by default.
“We haven’t seen the harms come to fruition,” said Jennifer Wagner, a bioethicist at Geisinger Health System Research who has training in law and anthropology. If individuals want to give broad consent for the use of their data, Wagner added, “quite frankly, my personal opinion is that individuals should have the ability to do that, and that that’s not necessarily something that we need to be overly paternalistic about.”
Wagner may be smart in her field, but she appears to be clueless in what corporations will do–and legislators will allow them to do–in search of profits. In one word, “anything.”
While I am a strong proponent of DNA analysis companies sharing (even for profit) totally anonymized results for research–because society DOES need these cures–my data is my property. I did not sell it to an analysis company, I hired them to perform a service, just like I hire a lab to analyze my tap water. Or I hire a doctor to set my broken bone. I sold neither the doctor nor the water company the right to my bone or tap water.
More protections to consider:
–Any data transferred must be made unidentifiable to an individual.
–Big Pharma and Big Medicine cannot obtain individual tracers to the donators of the spit.
–To ensure protection against hacking and/or accidental release of that information, laws must prohibit public AND private businesses and agencies from using genetic markers for any purpose but research. In other words, insurance companies, health care providers, and government agencies are forbidden from using DNA results to deny any product or service to an individual.
Longer term, enacting Medicare for All with a ban on carve-outs for pre-existing conditions would go a long way to “terror-proofing” the use of this genetic information for the legitimate hunt to cure what ails us.
Long story short, I did not sell 23andMe my spit. I hired 23andMe to provide me a service. Ownership did not transfer, just like ownership of my credit card information did not transfer when I bought a hammer from Home Depot. If 23andMe’s sales of my genetic testing results to outsiders identifies me personally, 23andMe can expect a slate-wiper of a lawsuit.
That ain’t “paternalistic,” Doc Wagner, that’s individual rights and freedom being protected from a profit-obsessed corporate culture.
I can assure readers hackers already have access to most or all genetic information submitted to these testing companies ..
Like many articles, this is a USA-centric article. I live in Canada. How am I protected if the US passes protective legislation but my country does not? Is the company bound world-wide by the laws enacted in one country? Doubtful.
Is a US citizen protected if the company resides offshore. If my DNA sample is mailed to a third country, whose laws apply? Canada’s, USA? or the third country’s?
The issues explored in this article go beyond the protection of DNA information.
i also live in Canada,, it is my experience that it doesn’t matter what country you are in,, these are global companies. They rarely concern themselves with location, worldwide, these genetic companies share data, your data, and even if you contributed your sample without knowledge or consent, your signature on the form they send you, is what they are going to use to say that you gave they all they needed to do as they wish with your sample or information from it. Even the hospital labs doing genetic testing for the courts, have no regulatory body that is watching them, they have the same forms, and claim the same rights. no genetic company will speak up to expose the errors or frauds or thefts of another. Like the medical field, they falsify whatever they have to. in order to hide their deception., They are private for profit companies, and large ones at that,, they will NOT allow anyone to slander them and cost them profits. So, the truth is money talks here,, and the bullshit is everywhere it needs to be to make the money keep talking.
Most of the testing is for the purpose of sharing in order to find related persons. Even this requires a lot of study to be effective, although the companies typically provide matches labeled as probable with some measure of genetic distance. The more roadblocks you put in the way of finding your matches, the more useless you render the testing. You can take a test and find some very general indication of your ethnic background, which is a nice-to-know but pretty much useless for any other purpose, and by not signing a release, this is what you get.
The author seems to subscribe to the principal that what people do must be regulated by some supposed expert, when the staff who will be hired to regulate will be less knowledgeable than the user. Why didn’t you talk to experts in genealogy? How about the users? And what is with this unchallenged assertion that “When it comes to communities of color, they’re disproportionately impacted by the lack of privacy?”
you get NOTHING if you do not sign the contract. relentlessly these dna companies have said to me over and over,, sign the contract or we do no testing. And the stuff you think they are testing for??? you have no idea what is happening with your information and who else is using it for what purpose yet unknown. And they track you as well .it would seem that all genetic companies share their data with each other. So, you may show up as a different person, but they know all about you on your second contact with them. please,, use the experiences of others,, learn to be aware.
I want HIPAA to apply to ALL genetic testing so that MY rights are protected if my parents, siblings, or identical twin get one of these tests. I shouldn’t have to surrender the 4th Amendment which I personally believe applies.
All databases of personal data should belong to the people who are in the database and not the companies. They should be deleted if the company is sold or bankrupt. Instead of counting them as an asset, they should be counted as a liability with costs offset only by data protection measures.
I agree, however, they have been making tons of money from sharing and selling your data since dna came on the scene, The courts handed them their profits, and their controls. I suggest we also look at the government bodies who allowed this,, who started ordering dna testing to be used in courts, without regard for the usual protections for privacy or a humans rights. There are currently none, look at the contracts,, if you do not sign it,, they will not run testing,, I have had several labs make that very clear to me. If you do sign they own you. bad situation., and one that it can be said to be a very dishonest state of business for a very long time for these labs.
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