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By Maggie Fox
It sounds like a fun holiday gift idea: a DNA test that can tell your sister-in-law if she really has Native American ancestors, or a test that promises to make your friend a perfect diet based on her genes.
Home DNA testing is probably a big seller for the next few weeks, but privacy experts believe that consumers should be cautious. Last year, New York Senator Chuck Schumer asked the Federal Trade Commission to "seriously look into this relatively new type of service and ensure that these companies have clear privacy policies. and equitable ".
The problem is that when you send a tube from your pin or a cotton swab to your cheek, you give your complete genetic code. Each cell on this swab carries the complete sequence of your DNA, including the mutation pattern that makes it unique.
"It's your most valuable asset," said Peter Pitts of the Center for Public Interest Medicine, a nonprofit advocacy group.
Legitimate genetic testing companies undertake not to sell or disclose such data without consent.
"We respect and share Senator Schumer's concern for customer confidentiality and believe that any regulation should reflect the commitments we make to our customers," said Ancestry.com in a statement in 2017.
"We do not sell your data to third parties or share it with researchers without your consent."
Read the entirety of the agreement
But generally, broad consent is part of the initial contract entered into by a consumer with a company when he submits the test for analysis.
"Obviously, there is a lot of fine print," said Mary Freivogel, president of the National Society of Genetic Counselors. "Whenever you do something and you have an important and long agreement in front of you, I think a lot of us are used to just clicking" accept "."
Even if you read the entire contract, which can last pages, you may not understand what you authorize the company to do, said Hank Greely, director of the Center for Law and Biosciences at the Stanford School of Medicine. .
"There is no legal limit to what they could do, with the exception of the agreement you make with them, whether or not they can choose to to follow, "added Greely. "If they do not follow it, the chances that you will discover one day are very, very weak."
And it does not matter if your sample is for researching Neanderthal ancestors or looking for genes for rare diseases. It does not matter if the sample is destroyed. The code itself is digitized and can be shared countless times and in many ways.
"It's the most precious thing you have."
"Even if you send your DNA for genealogical work, these companies usually run SNP tests on hundreds of thousands of markers, even if they only look for a few hundred markers," Greely said. An SNP (pronounced "snip") is a single-nucleotide polymorphism, a difference in the one-letter genetic code that can cause illness or can bring back your great-great-grandfather.
"This analysis shows things about your health that the company never told you because it's not their job," he said. "They are in the genealogy business."
So here is potentially devastating information about your health that is in the hands of someone else, Greely said.
"For a significant percentage of us, there are really scary things in our genomes," he said.
This information may or may not be helpful to someone else.
"Maybe you're doing it for fun, for laughing or for conversation at the holiday table but at the end of the day you can have a good time, but the company can now sell this information in 100 different ways" said Pitts.
"You do not want this information to be shown to other people," he added. "In the end, you do not want an employer to have access to your information."
Not so difficult to identify you
A 2008 law entitled the Non-Discrimination of Genetic Information Act prohibits discrimination based on genetic information, which includes the dismissal of someone who has a gene predisposing to an expensive illness. But it would also be hard to prove that an employer did that, Pitts said.
At present, it is difficult to identify a person based strictly on their DNA sequence. But as people enter more and more information into the databases, it could become easier.
According to a recent report from the journal Science, more than 60% of Americans of European descent can be identified with the help of DNA databases. The researchers reported that not only the police could use this information, but also other people looking for personal information about a person. Earlier this year, the state killer, Golden State Killer, was identified after detectives used genealogy websites to match DNA taken from crime scenes to his close relatives. .
23andme offers a comprehensive questionnaire on health, lifestyle and preferences. If it allows customers to pass all the questions of their choice, they can bring a lot of personal details with their DNA sample.
"For a not insignificant percentage of us, there are really scary things in our genomes."
"Especially when it's associated with medical information, you can say that it's about a 39-year-old Westchester County woman, measuring 5 feet 7 inches, who has them." blue eyes and cystic fibrosis – it would not be so difficult for someone to find you, said Greely.
"Now, would anyone try?" I do not know. If you are a member of the royal family or a celebrity, I guess people would do it. Is there a snoopy parent? Is there anyone who is curious about you?
In 2013, a team from the Whitehead Institute for Biomedical Research reported identifying the identities of 50 people from the DNA, anonymously data for scientific studies, with the help of Internet databases readily available.
That's why companies are striving to remove personal information from genetic codes, but all those who have been victims of credit card fraud or identity theft know that anonymizing data is far to be infallible.
"You can not promise people absolute confidentiality," Greely said. "The other side is that it's possible that someone hackers a company database containing your information. My financial information has been hacked three times in two years. All these things are there. "
Most of the sharing is for legitimate scientific research and many people may want to help in this endeavor.
"Suppose they are looking for new genes related to diabetes," said Freivogel.
"They want a wide range of DNA from people with diabetes as well as a large number of non-diabetic samples." It's easier to buy that data than to recruit people. thousands of volunteers.
"Very often, companies are looking for large sets of DNA samples to research, find new genes, or even validate the genetic tests they have developed," said Freivogel.
Risks of illness
People may not want to help a company that is trying to profit from their DNA and not associate a "scientific research" with an enrichment of the bottom line of a company.
And people may think that they are ready to receive interesting news about their risk of illness, until they really understand them.
"This has emotional consequences and consequences for family dynamics," said Freivogel.
"If you get a positive result, you may have to share it with your five sisters. And are you ready to do that?
People who undergo genetic testing in a clinic will almost certainly be offered advice, but not home testing.
"Ideally, we need to talk to people before they make the decision about genetic testing," said Freivogel.
"You need experts to help people understand how much to put in this DNA result."
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