8 ms·
One DNA test said he was likely to get Alzheimer’s, the other said he wasn’t
- Spooky23 8y agoIMO feeding the anxious with fear about supposed medical maladies is why their practices are unethical.
- MrStonedOne 8y agoKnowledge is never unethical.
- Cyclone_ 8y agoWhat if it's knowledge w/o context that can be more likely to confuse than help someone?
- torstenvl 8y agoIf someone has access to data and doesn't know how to interpret it, they should go out and find someone who can help them. At the very least, they should try not to jump to conclusions. There is no ethical excuse for withholding information from someone about their own biology.
- Broken_Hippo 8y agoI would argue that knowledge without context is incomplete knowledge unless you can reasonably expect the receiver to have the context necessary. You aren't really being ethical if you aren't giving a truthful account of the information. It kinda falls under "well, I didn't actually lie... I just didn't say more than absolutely necessary. It isn't my fault if they assumed wrongly." In the example of early-onset alzheimer's, complete information would come with a recommendation of retesting, given the incidence of errors, a likelihood of the disease (was given), and whatever the accepted medical advice to follow afterwards is. It would probably be best to include warning signs of when to see the doctor about it if most doctors and insurances won't cover anything without symptoms. You can have all the legal disclaimers on this as well.
- teddyh 8y agoCherry-picked details and facts can be intentionally misleading, and still be true. Facts can also easily be spun into almost any narrative, all the while still being technically true.
- Cyclone_ 8y agoI'd be OK with these places charging a little bit more and letting people talk to a consultant that could help interpret the results.
- prepend 8y agoI had to work with a genetic counselor before my doctor would allow me to order a specific exam. The interaction was not very useful. They charged $450. My insurance did not cover it. They only met remotely via Skype. They read the exact material that was available to me through google. They were more about ethics counseling than interpretation of results at all. This person was not a very helpful consultant, but a layer of bureaucracy. I would have loved someone to help me interpret results. In my case it was someone who I said “I want this exact test on this exact gene.” And they said “Are you sure, if you know here’s what it can mean.” And I said “Yes” so the lab ran the test and gave me my results.
- jryan49 8y agoAt least there are a million disclaimers, specifically saying if you have depression or anxiety disorder or hypochondria to not enable the health checks.
- adventured 8y agoThe concerning prospect, which seems inevitable, is that the government gets heavily involved (after the nth scare story), regulates the hell out of the sector, and then I'm paying $5,000 for a service that used to cost $99. That is, after - if - I get permission and approval through my insurance provider, and after I give a doctor $500 before and after each test. Then I'll be reading articles about how expensive simple genetic services are in America and nobody can figure out why. Then more laws will be proposed to fix the problem, for something must be done about the gouging fees charged by genetic services providers.
- labster 8y agoYou sound like another happy Theranos customer. The US managed to hit the sweet spot of enough regulation to raise prices over developing countries, but not enough regulation to limit prices like developed countries.
- Spooky23 8y agoThat’s just lawsuit defense. People do that when they know customers will hurt themselves. Curiosity killed the cat.
- village-idiot 8y agoAnd bad for the consumer even if they’re right. How are you supposed to plan for or cope with the knowledge that you’re going to lose your mind in 15 years?
- geomark 8y agoI definitely think there is some planning you could and should do.
- flerchin 8y agoWhat? Coping is personal, but planning would be critical. Long Term Disability Insurance is totally a thing. One would probably make different reproductive decisions among other choices. The entire argument against knowing seems to be that it might hurt your feelings.
- jfk13 8y agoHow much is Long Term Disability Insurance likely to cost if you have been tested and shown to have a particularly high risk of developing a long-term disability? Oh, you wouldn't tell the insurer? That'll probably be grounds for invalidating the policy, if and when it ever comes to light. The more we are able to know about the likelihood of future medical issues on an individual level, the more dysfunctional the "insurance" model will become.
- village-idiot 8y agoNo, it’s that it’ll fill your life with dread without giving you the power to do anything about it. Yeah, you can do some piddly stuff around the edges, but no action you can take will prevent you from suffering one of the worst diseases we know about. It’s a bit like being put onto death row. Also, feelings matter. So “it’ll just hurt your feelings” is dismissive claptrap.
- vedtopkar 8y agoThis is why the entire field of genetic counseling is a thing. Barring a few specific diseases, genetic determinants of health are very complex and poorly understood. Moreover, genetic testing, especially of the consumer sort, are not always right. Even high-accuracy clinical tests have false positives/negatives. You need more than a web portal to work through the personal implications of genetic testing data as a patient.
- faitswulff 8y agoPerhaps he simply has multiple genomes? https://www.nytimes.com/2013/09/17/science/dna-double-take.html?_r=0 https://www.nytimes.com/2013/09/17/science/dna-double-take.h... "But scientists are discovering that — to a surprising degree — we contain genetic multitudes. Not long ago, researchers had thought it was rare for the cells in a single healthy person to differ genetically in a significant way. But scientists are finding that it’s quite common for an individual to have multiple genomes. Some people, for example, have groups of cells with mutations that are not found in the rest of the body. Some have genomes that came from other people."
- stochastic_monk 8y agoLast I heard, 23andme was using microarrays. The transition to massively parallel sequencing didn’t go well and they rolled back. The DNA placed on the chip will be a heterogeneous mixture of whatever kind of cells provided. How they’d handle mosaicism, whether somatic or otherwise, I don’t know.
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- whatswrongwitu 8y agoThis sounds like Theranos.
- nyolfen 8y agoperhaps it's de rigeur to mention this in a thread about genetic tests, but if you've had it done already by one of the major providers, the service mentioned in this piece (promethease) is really fantastic. if you're lucky it won't tell you much you don't know, but learning about all the possible things to look out for (heightened risk of diabetes and adverse reactions to a medication, for me), sorted by magnitude, is exactly the kind of thing you'd hope to learn from personal genotyping. it's much more granular than what is offered by eg 23andme's health service, and is updated with new research. it's more than worth the $5.
- stochastic_monk 8y agoDo you know if Promethease has a similarly awful privacy policy?
- nyolfen 8y agoit has a pretty good one: https://promethease.com/privacy https://promethease.com/privacy > After 45 days Promethease deletes your Promethease report. > At no time is your DNA data shared - or sold - to any external party, period. We also do not sell any products like vitamins or supplements. [...] > We do not claim any ownership rights in your genome and it belongs to you only.
- stochastic_monk 8y agoFantastic. For this reason alone, I would endorse them over 23andme “We own your data forever and can do whatever we want with it”.
- jstanley 8y agoHow can we be certain that they aren't keeping a copy of our genome and/or sending it to other people?
- Avamander 8y agoSpeaking of this issue, is there no FLOSS effort to create software that could provide this analyzing service?
- m3nu 8y agoAncestry.com is known to report one of the ApoE-SNPs wrongly. I wouldn't be surprised if this happens for more rare genes as well. > Word of caution to those with data from Ancestry.com: in our experience, based on data in OpenSNP and from Promethease users since 2006, Ancestry data always reports rs429358 as (T;T), even for people who's data from other sources indicates they are (C;T). https://www.snpedia.com/index.php/APOE https://www.snpedia.com/index.php/APOE
- psychometry 8y agoThis is why they need to report QC scores with each SNP's genotype. They definitely have this data.
- gwern 8y ago> “It’s not about the issue being half-baked,” the doctor replied, “but what the heck do we do about it, once we know, other than create high anxiety?” Loads. Are you seriously telling me that you can't think of anything useful to do with this knowledge? (What about if he wants to have kids?) > The doctor referred Mr. Fender to a geneticist, but it turned out he did not see patients under 50 who were not symptomatic and had no family history of the disease. > Mr. Fender then tracked down Jill Goldman, a genetic counselor specializing in dementia at the Taub Institute at Columbia University Medical Center, who described a multistep process of counseling and confirmatory testing that’s been the standard of care for 25 years. She typically serves people at high risk of inheriting a disease, and insurance usually covers both the consultations and the tests. But it was unlikely to cover the costs in the absence of family history. “It was like a chicken-and-egg thing,” Mr. Fender observes. “I needed a medical test to prove to them that it was real, but I couldn’t get a medical test until I could prove to them that it was real.” > Meanwhile, he happened to see a holiday special — $69 — for Ancestry’s genetic risk test. There are problems here, but they're not with 23andMe or Ancestry.com, I don't think.
- sambull 8y agoOnly problem I had with ancestry is that they sold me to a mailing list or people are mining it somehow for physical mailings. So far two separate religious organizations that my wife would have ancestry with based in their DNA tests started hard campaigning her to join the Quaker church. According to ancestry.com she was a direct descendant of some big shot in the church. I'm convinced their selling groups DNA profiles of some sort or allowing them to target them in marketing campaigns.
- Gatsky 8y agoReally? You don't see a problem with these companies selling tests to people and then dumping the cost of confirming the result and dealing with the implications on the already strained healthcare system? Meanwhile 23andMe makes billions selling the data to pharma?
- gwern 8y agoI don't because 23andMe didn't flag it in the first place, disconfirming it was an order of magnitude cheaper than his interactions with the supposed adults turned out to be and didn't involve any catch-22s or bullshit reasoning (a geneticist should know that family histories can be wrong and de novo mutations exist, and anyone with 2 brain cells to wire together should realize the incredible value of learning you have early-onset AD rather than paternalistically dismiss it as useless data), and the DTC companies are approaching 10 million customers with few major issues - not that this could be called a major issue in the first place. > implications on the already strained healthcare system? The healthcare system didn't do squat. That's kind of the problem here. In fact, if we're going to discuss the system as a whole, I would point out that not sequencing everyone is immensely costly and a major failing of the healthcare system, as testing would pay for itself just in terms of better dosing of drugs like warfarin. There shouldn't even be a question of learning whether you have early-onset AD, it should already be known. > Meanwhile 23andMe makes billions selling the data to pharma? They don't. The deals are in the low millions as far as is publicly known (and if you're referring to GSK's recent investment in 23andMe, that wasn't a sale). And if they are, it's not clear whether that makes 23andMe even net profitable (they're at >$1b in total VC), and even if they have revenue, that doesn't mean their investors have made 'billions', and finally, if they did, good for them, because that means they created value by subsidizing DTC testing for almost a decade, cut through the regulation, and created a large useful database on par with the UK Biobank, which wouldn't've happened otherwise. (If you don't believe me, ask someone how useful the Million Veteran Project has been compared to 23andMe or UKBB; or just do a site search on biorxiv.org...)