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With Maggie Fox
It is likely that there is such a volunteer holiday grant: a DNA test that tells your spouse whether it is true American Native American ancestors; or a person who is committed to making a perfect diet for a friend based on his genius.
Home DNA surveys tend to be a major retailer for the next few weeks, but privacy experts say consumers should be careful. Last year Chuck Schumer called New York Sen. a Federal Commerce Commission "will look forward to this new type of service and ensure that these companies have clear and fair policies."
It is the problem, when you put away a tube of your spit or a swab swab, you give your full genetic code. All that little girl swab all will hold the entire DNA series, and # 39; including the pattern of its definition that makes it especially with you.
"The most valuable thing you are," says Patrick Pitts of the Public Interest Medicine Center, an unplanned advocacy group.
Legal genetic certification companies will promise not to; sell or distribute this data without agreement.
"We respect Sen. Schumer's concern and concern for consumer privacy and believe that any regulation should be in line with the commitments which we make for our customers, "said Ancestry.com in a statement in 2017.
"We do not sell your data to third parties or we will not share it with your unanswered researchers."
Read the entire agreement
Generally, broad permissions are usually part of the first contract that a consumer can do with a company when he passes the test for analysis.
"In particular, there is a lot of good printing," said Mary Freivogel, president of the National Association of Genealogical Councilors. "At any time you do anything and there is a great deal, long before you, I think that many of us are used to just click & # & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 39 ;. "
Even if you read all the agreement, which can proceed to pages, you may not understand what you are trying to & # 39; company, Hank Greely, director of the Center for Law and Wellbeing at Stanford Medical School, said.
"There is no legal limit whatsoever they can do as well as the agreement you are entering with, whether or not to # 39; choose to follow, "said Greely. "If they do not follow it, the opportunity you've ever got very, very low."
And it does not matter whether your sample is specified for use in the search of Neanderthal ancestors or just; looking for a rare illness. It does not matter if the sample is destroyed. The code itself is digitized and can be shared several times and in many ways.
"Your most valuable thing is."
"Even though you install your DNA for genealogy, what are those companies that are typically run as a SNP test of hundreds of thousands of marks, even if they can only Looking for a hundred marks, "said Greely. A SNP ("snip") is a polymerphism of singilteototide, the difference of one letter in a & # 39; a genetic code that can cause or cause disease; It could be back to your brilliant grandfather.
"That study shows things about your health that your company has never left because this is not the business they have," he said. "They are in the genealogy industry."
So, this is some information that may be broken on your health and in someone's hands, Greely said.
"For a very bad percentage, there are real frightening things in the genomes," he said.
This information may not be useful for someone else.
"You may do it for fun or for laughter or for a chat at your holiday board but at the end of the day you may have a good time but the company can now get that information sold from 100 different ways, "said Pitts.
"You do not want to show that information to others," he said. "At the end you do not want an employer to have access to your information."
That's not hard to mark
The 2008 law called the Generation Information Act prohibits discrimination based on genetic information and would do so; including to burn somebody because they have a gene that is; anti-expensive disease. But it would also be difficult to prove that a employer did, said Pitts.
Nowadays, it's hard to recognize anyone who is firmly based on their DNA series. But as people enter more and more information into databases, it can become easier.
Over 60 per cent of Americans with some European descendants can be recognized by using DNA databases, according to a recent report in Science magazine. Not only does the police have to use this information, so others may be able to use this information; seeking personal information about someone, telling the researchers. Earlier this year, the Golden State Killer was identified after genealogy websites were used for detectives to match DNA that was taken from crime scenes with the relatives who were away.
23andm has a wide ranging query about health and lifestyle practices and choices and although it allows users to streamline any of them that they do; choose, they can add many personal information to their DNA sample.
"For a very bad percentage, there are real fearsome things in our genomes."
"Especially if it is linked to health information, you can say that it is a 39-year-old woman from Westchester County, which is five feet, seven inches, with blue eyes with cystic fibrosis – it would not be so hard for someone to find, "said Greely.
"Now would anyone ever try? I do not know. If you are a member of the unidentified royal family of a kind, I believe there would be people. Is there a relationship? Is someone just horrible about it? "
In 2013, a team at the Whitehead Institute for Bio-Medicine Research stated that they confirmed that 50 people from DNA were donated anonymously for scientific research; using easy-to-use internet databases.
That's why companies are doing their best to take away personal information from the genetic codes, but anyone who has lost their credit card is aware of or does not have a credit card; steal identity that unidentified data is far from being rude.
"You can not make a promise to people completely secret," said Greely. "The other side is that someone can find a company with a company that contains your information. My financial information has been extracted three times in two years. Everything is out there. "
Most of the proportion is for legitimate, scientific research and there may be many people to help with that effort.
"Consider that they are looking for a new generation related to diabetes," said Freivogel.
"They want a large set of DNA from people with diabetes and a large set of samples of people with no diabetes." That data is easier than employing thousands of volunteers.
"Many companies are searching for large sets of DNA samples to investigate, to find new genes or to verify genetic verification that they have developed," said Freivogel.
Some people may not help to try to make a profit where their DNA, and & # 39; they may not connect "scientific research" by clicking on. contribute to corporate foundations.
And people may think they're ready to get some interesting news about their dangers, so that they can get it.
"There are emotional effects that accompany him, and family outcomes," said Freivogel.
"If you have a good result, you may have to share that with your five sisters. And are you ready to do that?"
Certainly, clinicians have genetic exams at counseling clinics, but not for home exams.
"Sufficiently, we need to talk to people before deciding on genetic tests," said Freivogel.
"Experts need to help people understand what stocks are to contribute to the result of that DNA."