Posted on 04/30/2017 1:48:45 PM PDT by nickcarraway
The question can’t get more personal. Can you give up the rights to your DNA data?
The answer is yes. And Larry Guernsey of San Jose knows firsthand.
Family intrigue led Guernsey to buy his wife a DNA test kit from Ancestry DNA.
“She’s always been interested in genealogy,” he said, noting that his wife had always wondered if she was part Indian. The $99 Ancestry DNA test Guernsey bought as a Christmas present uses a saliva sample to trace family history.
“A simple test can reveal an estimate of your ethnic mix,” says the announcer in an Ancestry DNA web video. The graphic on the screen shows a percentage breakdown of ethnicities. “Like if you’re Irish or Scandinavian, or both,” the announcer explains.
For the Guernseys, the test was supposed to be fun. But their curiosity twisted to suspicion when they read the fine print. To proceed, they would have to give Ancestry a “perpetual, royalty-free worldwide transferable license” to use their DNA. Guernsey was shocked.
“That entire phrase: ‘perpetual, royalty-free, worldwide, transferable,’ it sounds like they have left it open to do anything they want with it,” Guernsey said.
Larry was concerned that the “transferrable license” could put his family’s DNA in the hands of an insurance company -- that could later deny health coverage. “You could get into some really weird science fiction scenarios,” he said.
We brought Larry’s concerns to Stanford law professor Hank Greely, who teaches and writes books about the intersection of biotechnology and the law. We also brought Ancestry’s contract, including the “perpetual royalty-free worldwide transferable license.”
“I think that was written by a lawyer who was probably being paid by the word,” Greely quipped. The professor then explained that a federal protection called GINA -- The Genetic Information Nondiscrimination Act -- safeguards the public. Your DNA cannot be used against you in employment and health insurance.
“Under current law they can’t deny you health insurance because of genetic information,” Greely said.
But Greely says that protection doesn’t apply to things like life insurance or long-term care insurance and there’s no guarantee GINA will be on the books forever. In fact, a controversial bill in Congress right now would strip away consumer-friendly parts of GINA. Still, Greely says human DNA doesn’t reveal as much as you might think.
“Our DNA, frankly, isn’t that exciting for the most part,” he said. “I’d much rather give you my DNA than my credit card records or my Google search records.”
If that’s the case, why do ancestry and other companies like it require a DNA license to join? Money.
Greely says medical researchers and pharmaceutical companies routinely need DNA data to develop new products. Companies that have big DNA databases, like Ancestry, sell it to them. “Some of them get a fair amount of their revenue by selling the analysis of your DNA,” Greely said.
Ancestry’s website advertises that it has 3 million people in its DNA registry and boasts “the world's largest consumer DNA database.” We’re unsure how lucrative that data is because the company is privately held and isn’t obligated to publicly report how much it makes from selling DNA data.
We asked Ancestry for an interview. It declined.
In a statement to NBC Bay Area Responds the company said, “We will not share DNA data with third party marketers, employers or insurance companies.”
Ancestry’s website currently tells users they have a choice to later “delete your DNA test results” or “destroy your physical DNA saliva sample.” Ancestry also says it stores users’ “DNA sample without your name.” Those statements are posted to its privacy page. However, they’re not in the contract you sign.
“If it bothers you, if it offends, if you’re worried about what might be in there, then you shouldn’t sign this contract,” Greely said.
Larry didn’t sing up. He cancelled, because handing over his family’s DNA to find his ancestors was just too much of a risk. Who knows, he said. What happens if “five years from now ‘Evil Corp.’ decides to buy up all this genetic information?”
Professor Greely noted that DNA tests for genealogy are fairly cheap right now. Perhaps there’s a reason for that. The low price consumers pay today might be subsidized by the future sale of their DNA data.
Greely said he could foresee DNA testing companies eventually offering a pricing model that employs a sliding scale: the privacy you want, the more you pay.
Concerns it brings up:
* Surprise relatives showing up when you just wanted information for yourself. One kid already found relatives of his sperm donor this way.
* You test positive for a genetic disorder. It is in the genetic test info they find. Your relatives may not want to know the risk, but through the site, it may become public information.
* You could unwittingly become part of a medical study without your consent, and that could affect your descendant.
Example: Your family loses someone to a disorder. The genetic information to test for risk factors to find that exact trait is your decision in a medical study. (I participated in one).
I made that choice to be tested and give detailed medical information, with the condition for privacy. I did NOT authorize for their to be a risk to my children, siblings and other relatives to have that information associated with them because it could be used against them whether by insurers or if eugenics comes roaring back.
* As new genetic defects are identified, the DNA tests could be used to locate people to notify of traits they carry but don’t necessarily impact quality of life now or even in the future.
Example: there is a genetic locus associated with an increased risk of biopolar disorder, depression, schizophrenia and high levels of creativity. If massive database screening identifies those with that locus, do you end up penalizing people, like children, who carry the trait but may not become mentally ill?
How accurate is this test?
How accurate is this test?
I’d always heard the ancestory sites were the Mormon’s gathering data to posthumously baptize people when they pass.
Yes. What’s the problem? I aim to do the DNA thing soon. I’m just curious and it fascinates me. And I’m not dumber than words. It’s $199 for the complete package and the contract spells everything out. It’s a personal choice; if the price and the terms of the contract are unacceptable, just don’t do it.
The only medical issue it noted was a slight chance of hypersensitivity to Warfarin.
your credit card?
I'm surprised you remember the slut's name.
I know someone who found a first cousin this way. She wasn’t looking for a cousin but she signed up for Ancestry and immediately got an email from a woman who was looking for her father. Her uncles were not very happy.
Without too much hassle, such material could then—theoretically—be introduced into a crime scene.
Ultimately, when you give a corporation (or the State) your DNA, you're giving them the power to frame you...
Where the heck do you think my new liver is coming from?
I once got an ancestry.com DNA kit from my brother. I sent in My DNA, but I used a fake alias.
Even if these companies where to resell this information to insurance companies, that would be no way the insurance company could verify who the DNA belongs to.
Why would a doctor do this?
Did he/she/it tell you why?
“The last time I was in my Dr. had his assistant take a DNA swab from inside my cheeks.”
My Dr. did not tell me why.
I do trust him. His Father was my Dr. before his Son joined his practice. The Father is very conservative/Christian and the Son seems to be the same.
BTW, he is a Harvard grad.
As folks discovered in the first Radio Shack bankruptcy, the company’s pledges to its customers are worthless when there is a valuable asset that can be sold.
“Ultimately, when you give a corporation (or the State) your DNA, you’re giving them the power to frame you...”
It’s another one of those items that will be stored in some massive data base along with a person’s entire online history, phone calls, electronic money transfers, and gps history. “Well Mr Jones, we see you used your credit card a block away from the murder scene, your car’s gps and your phone place you there within the time frame, and we found some hair that matches your DNA at the scene. We also have records of your emails in which you expressed strong feelings about....”
I know dam well there are buyers on the market that are keenly interested in DNA types, to building a database that can be sold or to be used by research groups.
Reminds me of a techno thriller novel where everyone on earth or most of them were eventually catalogued and a virus was sent out that made sterile anyone that wasn’t blye eyed and blonde.
Or...imagine this, you have a certain ancestry thats wanted say as an organ donor to some billionaire, they find you and next thing you know you are getting harvested. Or eliminated because you might be a threat to any certain group.
Actually, you seem to be the only one who understands the issue at hand. Whos name is associated with a sample is really quite irrelevant. “Privacy” and higher insurance payments are pretty low on the scale of whats going on here. Its about ownership and patenting of DNA.
Thats also whats behind the debate between fetal stem cell research vs adult stem cell research.
If you own your DNA, then you could in the near future order yourself a new liver and get one for, lets say, $50,000. If I own the patent on your DNA, your new liver costs $500,000. If something about your DNA turns out to be a valuable therapy in the near future you could give the rights to replicate it free and cure the world of some affliction, if I own your DNA, you will get nothing and I will cure the world...at $50,000 each.
We shared a beer. It was a kiss. [saliva]
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