DNA test security alert: Why you should think twice about getting one [updated twice]
DNA test security alert: Why yous should call up twice about getting 1 [updated twice]
UPDATED with details of 23andMe's decision to get public and its presentation to investors as a visitor that holds "the world's premier re-contactable genetic database."
Consumer Dna examination kits, such every bit those offered by Ancestry.com, 23andMe and others, create huge privacy risks that most Americans may not be enlightened of. This is according to a "60 Minutes" report that aired Sunday (Jan. 31) in the U.Southward.
That'due south because the user-privacy agreements that customers sign off on tin give these companies wide leeway to use their customers' DNA for other purposes, University of California, Davis law professor Lisa Ikemoto told "threescore Minutes" correspondent Jon Wertheim.
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"You're allowing your personal information to be used by others," Ikemoto said. "That information's being transferred to third parties. And it's being used for uses that yous never imagined."
The concerns about misuse of Dna are and so neat that virtually a year ago, the U.Southward. armed services brash active-duty service members not to submit samples to consumer Dna-testing services.
"These DTC [direct-to-consumer] genetic tests are largely unregulated and could expose personal and genetic data, and potentially create unintended security consequences and increased gamble to the joint force and mission," the Pentagon memo said.
The appeal of consumer-DNA services
Why exercise nosotros continue to use these services? The companies' Television set ads show the joy of discovering hidden family histories, notwithstanding those beginnings-DNA tests are at best educated guesses. (Ancestry.com calls it an "ethnicity judge".)
You are too giving the company vital genetic data near your parents, your grandparents and other ancestors, plus your children and grandchildren, whether or not they've nonetheless been born.
At that place's no specific Hungarian or Chinese gene, but rather patterns of genes that many, only not all, individuals in a given population will have.
More useful are the tests that expect for specific genetic abnormalities that could lead to disease, such as the BRCA mutations linked to breast cancer. Yet 23andMe charges $199 for the health tests and simply $99 for the ancestry tests. Ancestry.com, or more specifically its subsidiary AncestryDNA, doesn't offering such a test.
There'south money in that at that place DNA
The existent value of 23andMe lies not in the revenue from consumer DNA tests, FBI Supervisory Special Agent Edward You told Wertheim, only in what can be washed with all that consumer DNA in one case the initial tests are completed.
This may be 1 reason the privately held 23andMe is reportedly valued at $4 billion, and why Ancestry.com was bought for $4.vii billion six months ago.
"The render on investment is aggregating the data and what they can do with it in one case they have enough of it," You said. "The value is in the data."
"Everybody is looking at what kind of data do I have access to, how much practise I have, and then how can I plow around and monetize it," You added.
Worries about how consumer-DNA samples are beingness used have come before. In 2018, 23andMe announced a $300 million bargain to "share" its customers' genetic information with pharmaceutical giant GlaxoSmithKline, or GSK.
To outside observers, it looked like 23andMe was selling DNA data, getting paid a 2d time for the same DNA that its retail customers had already paid the company to examination.
"The problem with a lot of these privacy policies and Terms of Service is that no one actually reads them," Tiffany C. Li, a Boston University police professor, told Tom's Guide at the time. "You are paying to help the company brand money with your data."
And, every bit Li had earlier said on Twitter, yous're non but giving upwardly your ain privacy, but that of all your blood relatives.
Reminder: When you requite your DNA data to companies like https://t.co/LSIykMkiaA or 23andMe, you give up non only your own genetic privacy, simply that of your entire family. (It's in the terms & conditions.)https://t.co/EAqQXtXLBS HT @xeniApril 26, 2018
Valuable results, just not everyone gets paid
Anne Wojcicki, CEO of 23andMe, told "hr" that her company had emailed its customers and asked them whether they wanted to allow their DNA to be used in the GSK research.
"Over fourscore% of our customers opt in," Wojcicki said. "We take empowered individuals with this opportunity to come up together, to crowd source enquiry. ... So that everyone is actually benefiting from the human being genome."
Partnerships between consumer-DNA testers and Large Pharma aren't necessarily bad. Last June, 23andMe said it and GSK were showtime clinical trials on new cancer treatments.
"They might produce something very useful," said Ikemoto. "In that sense, information technology'southward practiced."
But, she added, "it means that 23andMe and GlaxoSmithKline will make a huge amount of coin. The people who provided all the cells and tissues or DNA that'due south existence used will make none."
Spitting into the tube may exist forever
So what tin can you do about this? Starting time of all, be enlightened that when yous spit into that tube and post it off to the Dna-testing visitor, y'all are giving the visitor your entire genetic makeup. In fact, you're paying them to take it from you.
You are also giving the company vital genetic information about your parents, your grandparents and other ancestors, plus your children and grandchildren, whether or not they've yet been born.
So: Read the fine print in the company's privacy agreement first. See exactly what kind of rights the company gives itself to use your Deoxyribonucleic acid data, whether you proceed to accept opt-out rights later y'all submit your sample, and whether yous have the right to remove your DNA data from the company's records.
If some of the wording makes you uncomfortable, then consider whether information technology's worth it, especially if you're just getting an ancestry examination. But if your family has a history of genetically related disease, information technology may well exist worth the problem to learn if you or your children might carry risky genes.
As a courtesy, y'all might want to speak to your shut relatives about whether they consent to having your Dna, which is also their Dna, tested and analyzed for years to come.
Tom's Guide reached out to both Ancestry.com and 23andMe for comment. 23andMe referred the states to comments fabricated be CEO Anne Wojcicki on the air and in a "60 Minutes Overtime" online add-on.
Ancestry.com provided united states with this argument:
"Nosotros fundamentally disagree with any such accusation as practical to Ancestry. Protecting our customers' privacy is Ancestry's superlative priority. Our customers maintain ownership and control over their own data at all times, and can, upon asking, choose to have it deleted at any time.
Furthermore, we do not sell consumer DNA information. Our acquirement comes solely from the sale of our products and services to consumers, non our client's data. Nosotros have put in place industry-leading privacy protections and policies that are outlined in clear, simple, easy-to-understand language on our website."
After this story was initially posted, 23andMe provided united states of america with this statement:
"Our research program is opt-in, meaning customers must read and consummate a separate research consent document — across our terms of service — as inquiry participation is not required to join 23andMe. This informed consent process is overseen by a third political party Institutional Review Board (IRB), which ensures we comply with all legal and upstanding guidelines in our research.
We do not sell private client information nor do we include any customer data in our inquiry program without an individual'southward voluntary and informed consent."
Update: 23andMe goes public with aid from Virgin Group
On Thursday, February. 4, 23andMe appear that information technology was merging with VG Acquisition Corp., a special-purpose conquering company (SPAC) that's part of Richard Branson'south Virgin Group.
The deal values 23andMe at $3.v billion. In an investor presentation prepared by 23andMe and posted online, 23andMe says that one of its about valuable assets is "the earth's premier re-contactable genetic database."
The slideshow characterizes the database as "a vast proprietary dataset rich with both genotypic and phenotypic data [that] allows insights that unlock revenue streams across digital health, therapeutics, and much more than."
The spreadsheet also cites that 23andMe now has 9.eight million "cumulative genotyped customers" and is on track to have sixteen.4 million by the end of 2024. 23andMe's ancestry service is described equally "a mass entry point to building a revolutionary database."
SPACs are crush corporations designed to invest in privately-held companies and have them public without going through an initial public offer. The new company's stock symbol will be "ME" and it will trade on the New York Stock Exchange.
The existing private shareholders in 23andMe volition ain 81% of the public company. VGAC will own 11% and other investors will own viii%.
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Source: https://www.tomsguide.com/news/dna-test-privacy-dangers
Posted by: rodriguezforling.blogspot.com
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