I’ve also done 23andme and am open about my data. I can think of about 3 negative outcomes (maybe insurance problems that could occur without regulation; family privacy issues if someone wanted to track you or a family member down; annoying advertising), and about 1,000 positive outcomes (contributing data to help cure cancer, predict disease susceptibility, drug response, improve general health and wellness, et cetera...).
I think the pros far outweigh the cons.
Sure, 23andme and GSK and others will get richer off this but so what—they are doing something good.
The pros of using 23andMe has vastly outweighed any cons, real or hypothetical.
Here is a pro: I was able to print out a 3 page report to give to my new doctor that described what medications I had a low / high tolerance for and what medical conditions to look out for as I grow older. My doctor was floored-- and as a result we do a few extra tests every year to keep track of a potential eye condition I am at a higher risk for.
So what is the potential cons? Perhaps my DNA data is used to help make drugs to help other people? Even if it's wasn't aggregated and my data wasn't anonymous I'm still unsure what I am supposed to be afraid of.
I think people are forgetting to ask the key question - Cui bono? Who benefits?
23andme definitely benefits - all the data they have collected is very valuable, and they intend to sell it to pharmaceutical companies etc.
On the other hand, working in genomics, in my opinion the benefit to any one person having their genome tested in this manner is minimal. The simple reason is that most genetic alterations have low penetrance for phenotypes or involve complex interactions.
That article was pretty helpful. Now I am entering the rabbit hole of reading about 23andme data sharing.
What strikes me as interesting is their current business model: customers are paying them and answering their survey questions. That is quite brilliant, they get specifics about the people in their existing dataset, and once a critical statistical mass has been reached, they can find correlations between traits and genomic data.
I would be happy to voluntarily provide my time, effort and data towards medical research. While I don't have ethical problems right now (I don't expect a lot of privacy anyways), there is a small nagging fear that these things could bite me 20 years down the line when these genomic tests are much more sophisticated and I have already given them my genome. Small benign hypothetical example: I start seeing ads about cilantro on Facebook.
That fear was overpowered by my curiosity to learn about my genome. That's on me.
I thought it was interesting but didn't result in my learning some information that I can actually act on. I extracted my data from the site and instead of just using their own site analysis tools I uploaded it to some third party analyzers, which provided more detailed information that 23andme is either not willing or not allowed by regulations to share. All of my health findings were "good news" that made me feel nice, even though I know they are to be taken with a big grain of salt.
23andme was invaluable to me for health, but that is rarely the case. Most likely you won't learn anything profound from it, though if do you learn something important it is probably not going to be good news. I personally much prefer that I know my results now and be able to take action to address them than to not know, but I am also able to take a sort of stoic view toward it without worrying about it and allowing it to impact me negatively. Many people would rather remain ignorant of potential risk factors which may actually never impact them than worry their whole lives about something outside of their control(at least for now. CRISPR?). It can severely disrupt the lives of some types of people and cause them anxiety. So before you take it you should ask yourself if you are the type of person who would worry and obsess over it and allow it to disrupt your life. Though if you do find unpleasant results, most genotypes, with a few exceptions, are only weakly correlated with their risks so don't take most of the results too literally. And even for many of the genotypes with very strongly established links to disease, most are only risk factors, and only increase the probability of an outcome.
I don't think 23andme is currently reporting on health risks anymore until they get things cleared with the FDA, though, and the other reports they currently offer are not really useful. You still have access to the raw data, though, and can use a third party like https://www.snpedia.com/index.php/Promethease to analyze the data. It will generate a report for you, but remember these reports will try to link your SNPs to pretty much any studies available, even when there is very little evidence or low confidence of the interpretation. Don't take most of the results seriously unless it is well studied and well established. This may be difficult to determine sometimes unless you have a background in science or medicine, and it is a good idea to consult a medical professional first if there is something that you think is significant and concerns you.
23andMe is very open about selling people's data! More people are OK with this than you would think. And without those data sales to third parties, 23andMe would look very different. I hear (rumors only) that their customer acquisition cost is a large percentage of the kit cost, and what's left over could in no way cover running the SNP chip.
The 23andMe SNP chip is not very medically useful, and I can't imagine a doctor recommending anyone use 23andMe unless it's to find relatives to relieve stress about the matter. Doctors will order specialized tests from clinically vetted firms that have medical directors signing reports that put their medical licenses on the line.
All that said, giving people access to their own data is somewhat valuable; and when the company was started no one knew how valuable it would be. Turns out it's mostly only useful for genealogy, at the moment, and unlikely to be useful for much more to individuals.
What people really want to know can not be answered by these tests, for example, what foods a person should eat, how long they will live, what they need to do in order to finally find bliss, etc... There are a several tiny, shady, providers of this information that is in high demand by some consumers, but short supply from the science.
The upside is getting potentially profound information about yourself, in a way that is inexpensive and convenient.
There are also significant benefits to biological research. Most genetic variation is rare, and the effect of each of these rare variants is small, but they add up. Having access to larger datasets will allow us to be able to better correlate those variants to diseases. 23andme is already doing this with Genentech: http://www.forbes.com/sites/matthewherper/2015/01/06/surpris....
When I signed up for 23andMe at least half of my motive was to help them discover new things about people's genomes including the development of new drugs. So good for them, basically.
You can always export your raw data from 23andMe and plug it into third party (and I guess foreign) services that will give you some health info. Of course you should probably approach the results with some skepticism. I know someone who found out she had a gene that causes an early and very aggressive cancer and now can take pre-emptive measures that quite likely will save her life.
for me, using 23andme and other components of genetic testing related to health risk factors (all four of my grandparents passed away from or are currently battling cancer) helped me make some long-term decisions regarding my habits and lifestyle, and it did influence my decision to go into a healthcare-related field as a career. I like to think of it more as "I'd like to know what I'm up against," rather than "I have a morbid curiosity about what non-accident deaths will most likely happen to me"
The 23andMe data is amazingly useful for academic research too. I am familiar with a study (but not involved), soon to be published, that used their data to identify genetic variants responsible for a particular problem with pregnancy. The price was phenomenally lower than a more typical genome wide association study (GWAS) of which there are several publicly funded efforts. The results are much cleaner than previous studies simply due to the large number of individuals involved. The privacy controls are very stringent too.
What a excellent, albeit strange, model. People pay you to analyze their valuable info, which you then aggregate and use to develop a drug and sell to others. It's almost exactly like trash -- people give you their valuable commodity (pay you to take it, in some cases!), you put it in a pile and then sell the mining rights down the line.
If my data is going to be used to develop drug royalties, I want a % cut. Not a free test, certainly not a test that costs $100. I realize I will never get it, but I can hope.
Drugs, when you analyze the successes, are unfathomably profitable. The R&D is horrifically expensive, but the end product is immensely valuable. 23andMe is in a bit of a race to pick all the easy fruit from the genetic tree to develop into drugs. All the upside, a much easier R&D path compared to the conventional "throw shit at the wall until it sticks" style.
Allow me to offer a different perspective: I've used 23andme and it was one of the best decisions ever.
Not so much for the Ancestry part, which was also interesting and explained my above-average cold tolerance, but for the health stuff.
Granted, being from Europe they don't directly offer health services, but you can get the raw data and upload it to various sites for interpretation -- ranging from really accessible to follow-the-rabbit-hole style.
I've accepted from the start that everything is uncertain, or just a possibility, but it was still very useful, because I knew what to look for and thus able to validate easily if true or not.
Some things that were in the reports I already knew, some I suspected, some I had no idea and would have never guessed -- this last group had the most impact.
Some examples: allergies, motion sickness, needing above average amounts of vitamin C.
All very easy to test, but with an amazing quality of life improvement gained as a result of just changing some simple things.
So yes, a US company has my personal DNA data, maybe they will take care of my privacy, maybe not, but the quality of life gains were worth it, for me.
What other alternative would people like me have, from countries where there is no access to good doctors, of finding stuff like that, had there not been 23andme? Especially since I didn't even know what I was looking for.
I just plugged my 23andme data into both. Waiting for results.
I was thinking of sharing the results, is anyone interested? Is there really any good reason not to? I know people get all uptight about it but I'm not sure why.
23andme has made a pretty impressive recovery after the FDA issues a few years ago, although i think the jury is still out on how useful their data will be for drug discovery. I think they mostly have genotype data rather than WES, and i think their clinical data is all patient reported? The value of their engaged audience seems clearer, especially if it can help enroll clinical trials faster
I think the pros far outweigh the cons.
Sure, 23andme and GSK and others will get richer off this but so what—they are doing something good.
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