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.
We shared a beer. It was a kiss. [saliva]
“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.”
Then go ahead and do it with your DNA. Don’t give it to anyone. You use it and save the world.
Your scenario is actually quite Marxist and communist.
The parents, something the founders put in the constitution to protect intellectual property derived from hard work, are not to the DNA, but to methods and uses.
And the person getting a DNA analysis does not give their DNA. They give some spit. DNA is only one component of a huge huge amount of chemicals.
Patent your spit.
Not only do you have reading comprehension issues, your a moron. Patent that.
A wise human once said something along the line of “..fools and their money are easily parted..”
Keep guessing...it’s the best you prolly have.
I had heard, but don’t know the truth of it, that police have access to all the Ancestry DNA. So if you are a criminal, it may be foolish to give over your DNA voluntarily. P.S. I am not a criminal...just thrifty. If the price comes down substantially I might consider it. I notice there was a price drop, for 2 days only recently, to $75. I’m waiting for a $50 offer.
How accurate is the test? Send in the same sample under several different identities. Send in samples that differ in temperature, edmotional mood, etc.
What will the consistency rate be? That is just one of many measures of accuracy.
Then send in samples from kids who have both the same mom and dad, and kids who share 1 parent but not the other. See if the results make any sense at all.
How can a kid have a greater percentage of an ancestor than the sum of both parents for that ancestor?
Then compare the mail in saliva test accuracy with the in person blood test by a professional.
But accuracy of DNA is no different than accuracy of climate change or accuracy of many other uncertainties.
Every time I see the TV ad for this, I think I should get the kit, and swab a dog’s mouth, send it in, and see what response I get.
Three excellent points!
1. “I know damn 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.”:
Imagine a positive DNA that could be isolated, cloned and marketed for health reasons to prevent or slow down a disease or aging proces. Like resistance to diabetes, allergies, certain heart problems, asthma and chronic diseases like arthritis. If those genes can be isolated, found in an individual and cloned. In a dark side world, The finder of the “donors” could make a hugh finder’s fee and the company buying the DNA could make billions. Nothing is wrong with that if the donor got paid.
2. 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 blue eyed and blonde.:
An evil billionaire globalist, like $oreA$$, pays infectious disease MDs and pathologists to innoculate “donors” with a weakened pathogen to build up immunity to a killer microbe. Then, the evil globalist has his dna/cloning experts from the blood of the experimented ones, develop an immunization process to make his family, friends and trusted private army immune to the disease.
Then, they put suicide or unknown virus carriers on planes, trains, buses, in terminals,schools, cafeterias and other areas with a lot of people coming and going to start and spread the pandemic. A pandemic that kills everyone not immunized to prevent the pathogen from killing them. Isis, the Saudis, BLMers and the NK’s would pay billions for these weapons.
3. Or...imagine this, you, your children or grandkids, have a certain ancestry DNA trait that is wanted as an organ “donor” to some billionaire like $oreASS. Thanks to the lists you allowed/ they find you or your family memcers. The next thing you know you or your family members are getting harvested. After, they “harvest” your liver, on a dark side ebay, they put your heart, lungs, ovaries and whatever is in demand and left over out for a bid.
Due to the concerns mentioned in this article, my DNA, mtDNA, was done and is handled by a company in Canada called “Genebase” and I have been nothing except pleased by what they have provided and how they have done it. I do have to say that surprises did occur like finding out my mitochondrial DNA (mtDNA) Subclade H24a1, indicates my female line is Ashkenazi Jew. Furthermore, when one of my brother’s had the paternal line done, our line that way is Jewish also, J1c3(p58+). My other brother was not happy. On the other hand, I am delighted to know it.
A bill proposed by Republicans that will allow employers to require genetic testing has passed a key committee vote. (This was already in Obamacare but they are voting to expand it. Don’t be fooled that this wasn’t already in Obamacare).
The bill will allow employers to charge their employees for their healthcare premiums if they refuse to be genetically tested. Employees who take the test and show to have higher health risks would have a higher co-pay for their healthcare insurance.
Employees who decline genetic testing could face penalties under proposed bill
GOP Bill Would Let Your Employer Demand to See Your Genetic Information [H.R. 1313]
http://www.freerepublic.com/focus/f-news/3534288/posts
House GOP would let employers demand workers’ genetic test results
http://www.freerepublic.com/focus/f-news/3533477/posts
It Might Soon Be Legal for Employers to Force You Into a Genetic Test
http://www.freerepublic.com/focus/f-news/3533562/posts
New bill would let companies force workers to get genetic tests, share results
http://www.freerepublic.com/focus/f-news/3533526/posts
I noticed several years ago that many of the world’s great physicists are Hungarian Jews from Budapest.
I would love to see a genetic test of them.
When Dr. Teller spoke and took questions at my school, one of the questions was “who did he thing was the greatest physicist of all time”.
He replied that he considered a fellow Hungarian as the best. I forget what the name was.
....”What stops you from using an alias to purchase the test?”....
Well in a hospital setting someone will know your using an alias. They will often say you can have the tests done using an alias and nobody would know....but they will.
Nothing in anyone’s DNA has any value unless someone does a lot of work and spends a lot of money to find it out.
And then does a lot more work and spends a lot more money figure out how to utilize the discovery in a way that can help people.
And then does a lot more work and spends a lot more money to make it commercially viable as something many people can use on a real life practical level.
And that’s just the bare skeleton.
“...but I used a fake alias.”
Huh?
None, I would imagine, as your children only have 50% of your DNA. Their genetic code is unique to them.
I wouldn’t trust Ancestry DNA, as Ancestry tends to sell info.
Check out familytreedna.com instead.
I sent my cheek swab there for the basic test about 10 years ago. After seeing the results, I opted for a more advanced test and it revealed even more information that led me to distant cousins and ancestors I wasn’t aware of previously.
Try www.familytreedna.com
You don’t have to use your real name when you send in your samples.
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