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[Mariolee]

Old article (November 2013) but interesting. I've heard of friends who wanted to do this as well as some Gaffers and thought this might be something they may want to consider. It could be fear mongering and conspiracies, or it could be a legitimate concern.

I tried to trim the copying down, but I know that most of GAF never checks the original source and just goes by the OP so I decided to copy most of it but not all. There's still some interesting info at the source: Scientific American.

If there’s a gene for hubris, the 23andMe crew has certainly got it. Last Friday the U.S. Food and Drug Administration (FDA) ordered the genetic-testing company immediately to stop selling its flagship product, its $99 “Personal Genome Service” kit. In response, the company cooed that its “relationship with the FDA is extremely important to us” and continued hawking its wares as if nothing had happened. Although the agency is right to sound a warning about 23andMe, it’s doing so for the wrong reasons.

At first, 23andMe seemed to angle its kit as a fun way to learn a little genetics using yourself as a test subject. (“Our goal is to connect you to the 23 paired volumes of your own genetic blueprint... bringing you personal insight into ancestry, genealogy, and inherited traits,” read the company’s website.) The FDA had little problem with the company telling you why you had dry ear wax (rs17822931) or whether you’re likely to sneeze when you look at a bright light (rs10427255).

That phase didn’t last for long, because there is much more interesting stuff in your genome than novelty items. Certain regions signal an increased risk of breast cancer, the impending onset of metabolic diseases, and sensitivity to medications. 23andMe—as well as a number of other companies—edged closer and closer to marketing their services as a way of predicting and even preventing health problems. And any kit intended to cure, mitigate, treat, prevent, or diagnose a disease is, according to federal law, a "medical device" that needs to be deemed safe and effective by the FDA. Since mid-2009, 23andMe has been negotiating with the agency, and in July 2012, the company finally began the process of getting clearance from the FDA to sell the kit that it had already been selling for five years.

But as the FDA frets about the accuracy of 23andMe’s tests, it is missing their true function, and consequently the agency has no clue about the real dangers they pose. The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public.

Sound paranoid? Consider the case of Google. (One of the founders of 23andMe, Anne Wojcicki, is presently married to Sergei Brin, the founder of Google.) When it first launched, Google billed itself as a faithful servant of the consumer, a company devoted only to building the best tool to help us satisfy our cravings for information on the web. And Google’s search engine did just that. But as we now know, the fundamental purpose of the company wasn’t to help us search, but to hoard information. Every search query entered into its computers is stored indefinitely.

“The long game here is not to make money selling kits, although the kits are essential to get the base level data,” Patrick Chung, a 23andMe board member, told FastCompany last month. “Once you have the data, [the company] does actually become the Google of personalized health care.” The company has lowered the price of the kit again and again, most recently from $299 to a mere $99, practically making it a stocking-stuffer. All the better to induce volunteers to give 23andMe the data it so desperately wants. (Currently, the database contains the genetic information of some half a million people, a number Wojcicki reportedly wants to double by year end.)

What does 23andMe want to do with all that data? Right now the talk is all about medical research—and, in fact, the company is doing some interesting work. It has been sifting through its genomic database, which is combined with information that volunteers submit about themselves, to find possible genetic links to people’s traits. (The bright-light/sneeze genetic tag is a 23andMe discovery.) More promising are 23andMe’s attempts to recruit people who suffer from certain diseases, such as Parkinson’s and a few types of cancer. Simply through brute-force pattern matching, the company has a chance of finding genetic causes of these ailments, which could lead to a way to combat them. (And perhaps a blockbuster patent or three.)

That’s just the beginning, though. 23andMe reserves the right to use your personal information—including your genome—to inform you about events and to try to sell you products and services. There is a much more lucrative market waiting in the wings, too. One could easily imagine how insurance companies and pharmaceutical firms might be interested in getting their hands on your genetic information, the better to sell you products (or deny them to you). According to 23andMe’s privacy policy, that wouldn’t be an acceptable use of the database. Although 23andMe admits that it will share aggregate information about users genomes to third parties, it adamantly insists that it will not sell your personal genetic information without your explicit consent.

Even though 23andMe currently asks permission to use your genetic information for scientific research, the company has explicitly stated that its database-sifting scientific work “does not constitute research on human subjects,” meaning that it is not subject to the rules and regulations that are supposed to protect experimental subjects’ privacy and welfare.

Even if 23andMe keeps your genome confidential against hackers, corporate takeovers, and the temptations of filthy lucre forever and ever, there is plenty of evidence that there is no such thing as an “anonymous” genome anymore. It is possible to use the internet to identify the owner of a snippet of genetic information and it is getting easier day by day.

If you have several close relatives who are already in 23andMe’s database, the company already essentially has all that it needs to know about you. It is doubtful that 23andMe would be able to protect that information even if it were so inclined.

While the FDA concentrates on the question of whether 23andMe’s kit is a safe and effective medical device, it is failing to address the real issue: what 23andMe should be allowed to do with the data it collects. For 23andMe’s Personal Genome Service is much more than a medical device; it is a one-way portal into a world where corporations have access to the innermost contents of your cells and where insurers and pharmaceutical firms and marketers might know more about your body than you know yourself. And as 23andMe warns on its website, “Genetic Information that you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others.”

Present company excepted, of course.

 

[Valhelm]

That's interesting, and it's troubling that this information is not readily disclosed to patrons. I would prefer that they not keep my data in their system, let alone sell it, but I still appreciate the service they provide.

It would be nice if they took the Zuckerburg route, and gave you the service for free, taking your information in payment.

 

[Mariolee]

That's interesting, and it's troubling that this information is not readily disclosed to patrons. I would prefer that they not keep my data in their system, let alone sell it, but I still appreciate the service they provide.

It would be nice if they took the Zuckerburg route, and gave you the service for free, taking your information in payment.

I had no idea Facebook did this. How do they even ask you?

 

[Timeaisis]

Well that is a little scary.

 

[Little Green Yoda]

If you have several close relatives who are already in 23andMe’s database, the company already essentially has all that it needs to know about you.

This reads like sensationalism; don't think you can reconstruct someone's genome with only the genomes of a few relatives. Might get a good approximation, maybe.

The rest is scary though.

 

[GoldenEye 007]

That last warning on their website, if true, is ominous as hell. Damn.

 

[Mariolee]

This reads like sensationalism; don't think you can reconstruct someone's genome with only the genomes of a few relatives. Might get a good approximation, maybe.

The rest is scary though.

Yeah I was thinking about taking out that part just because it seemed like the shakiest of all of his points, and I didn't want it to discredit the rest of the valid points of the article.

Is there too much text? Is that why there aren't that many replies to this thread?

 

[Sho_Nuff82]

Obamacare already makes most of what they are discussing illegal, no? Large scale genomic profiling is a field with huge potential, I'd rather champion the search for cures than cower behind the bogeyman of data hoarding.

The fed needs to grow some balls and mandate that these large corporations doing large scale studies are bound by the same NIH and OSHAA guidelines as everyone else. Yes, that includes FB and OK Cupid and the like doing their big data studies. Human experimentation is human experimentation, scale is irrelevant.

 

[Mariolee]

I cut the OP down for easier digesting.

 

[HolyBaikal]

I'm still interested in getting genetic testing. I kind of wish I did it before they got stopped doing stuff.

I'm not that worried about the whole spying and privacy thing. I mean, it's already too late. Lots of companies already know lots of stuff about me. I think I'll be okay.

People should always have help no matter what their genes are. And if people are going to misuse genetic information, we should stop them. Because everyone is human and deserves love and support, no matter their genes.

But we should have more people's genetic information known about, so that we can help people. Instead of worrying about genetic privacy, we should worry about everyone being treated nicely.

 

[xbhaskarx]

I did it, as did some family members, no ragrets

 

[NYCmetsfan]

There's always fear about people using information against you when a new form of information appears.

People thoughts knowing names allowed power over someone(still seen in religion), books, printing photos, addresses, medical records ss numbers, phone numbers, email, call logs all when through the same thing. What ends up happening is that society ends up adjusting the norms of privacy and information.

Its scary but its really weird seeing the "they will have control over you" repeated in an almost religious way.

 

[kittoo]

To me, even after reading the article, the possibilities seem so enticing that I would still do it. A future of less diseases? Chance of knowing early what diseases I might get? Sign me up!

 

[freddy]

To me, even after reading the article, the possibilities seem so enticing that I would still do it. A future of less diseases? Chance of knowing early what diseases I might get? Sign me up!

Yep, eventually we could all have our own little pod we would never have to leave. Just have machines to keep us alive while we live an endless dream.

 

[Alchemy]

The major problem here, insurance and big pharma, would be greatly mitigated if we would fucking nationalize our health care system properly.

 

[Nexus Zero]

This article is idiotic. They use the aggregate data to enhance their understanding of the human genome. They've been pretty upfront about this.

 

[Makai]

I used the service a couple years ago. I'm not too concerned about genetic privacy and was happy to share my health and nationality results with friends. I even filled out their surveys. Like the FDA, I'm mainly concerned about its accuracy.