Be Careful about 23andMe’s Health Test
nytimes.com
nytimes.com
It actually helped me find an explanation for some weird symptoms I was having. After I told the doctor, “23amdme says I may have X” he said “yeah all those things could be symptoms of X” and we went from there.
Unfortunately the power of suggestion is a very real thing, so this isn't nearly as rational as it appears at first glance. There's a reason the medical profession is seriously concerned about outside tests, and it's not just cartel behavior. It's probably the same mechanism as the Baader-Meinhof effect.
Early variant discovery suffers from the winner's curse phenomenon: we overestimate the effect of newly discovered mutations.
As time has gone on, it has become clear that even for many Mendelian diseases, the genetic background plays a significant role in terms of who will develop the disease (or how early they will do so). The estimates of "penetrance" have fallen as we have obtained more data.
This affects clinical genetic interpretation as well as the automated stuff that 23andMe is doing.
What baffles me is why they aren't doing it themselves. A full genome sequencing (!) costs just $1k. I pay more than that for health insurance every month.
All of those examples are themselves strongly predicted by your genes. The weakest is what you eat, but just knowing what country the customer is based in is probably enough to go forward with.
It’s a damn NEW DARK AGE way of thinking to refer PEOPLE through one single universal word all the time - A CONSUMER!
Choose any word from x, and carefully observe your thoughts afterwards:
”23andMe has said that its health tests can raise awareness about various medical conditions and empower _x_ to take charge of their health information.”
x = [“customers”, “individuals”, “humans”, “people”, “citizens”, etc]
It's a business, and if you give them money that makes you a consumer. What's wrong with that?
Even customer is a better word, since it represents a person who comes to you voluntarily for an exchange of value, not just consumption.
We live in a world where words mean something specific, generally to communicate an idea, not warm fuzzy feelings, and it's important that we use the right words so not to fall into the trap of multi-national businesses pretending their employees are "family" because it sounds nice.
It is probably because very few has consumer as a part of their self perception, hence many are likely to identify less, and empathize less with a group or person described as such.
It's not wrong in a technical sense, but it can be used to avoid a stronger public reaction to e.g people getting hurt by a business practices.
One might frame it like this: If my business transaction as a consumer ends up with the loss of an arm, I'm still the one who has to live with only one arm.
If you were the consumer, you'd have to pay far more for a "test": these tests are just a method to get people to enter themselves in the database, and for them to sign their rights away, to 23andMe.
... and to monetize your genetic information infinitely without compensating you
Edit: I appreciate your concern about consumerism and the effects of being treated like cattle, I just think more descriptive words create better conversions.
"We're not just threads man!"
In this particular case, there are two ways to read the statement from 23andMe. You could interpret "consumers" as the people who have actually bought a product from 23andMe. Or, you could interpret it as the overall population of people who have health information and may buy the product. With the first interpretation, I think "customers" would definitely be the better word and would fit with typical business etiquette. Though I think the second interpretation is what 23andMe actually meant, in which case "consumers" or "people" would be more appropriate. If I had written the 23andMe blog post, I would have used "people".
Comparing the google search results for "empower consumers" and "empower people" is quite interesting.
I’m not in any sense offended by the words company chooses, and neither I care about them being polite or not, the heart of the issue is the attitude and the word consumer expresses that very attitude rather accurately.
1. Netflix has consumers
2. Mubi has customers
The most popular model that we all know is called the Gartner Hype Cycle. https://www.gartner.com/en/research/methodologies/gartner-hy...
Arxiv has a few articles on hype cycles for example:
"A simple interpretation of the growth of scientific/technological research impact leading to hype-type evolution curves", Campani, 2014. https://arxiv.org/abs/1410.8685
"Hype Cycle Dynamics: Microscopic Modeling and Detection", Hashemi, 2018. https://arxiv.org/abs/1809.08939
You can also type "gartner hype cycle" in Scholar or sci-hub and there are many hits.
But I can neither confirm nor deny the existence of such a lobby that you speak of, which is funded by.. umm.. crime industry?
If a family member signs over their genes, and they share a lot of genetic material with me, my privacy is compromised.
I like to think I should have some form of agency over the intrinsic things that make me who I am, but this industry couldn't care less about that. That squicks me out.
Would you send me a scan of your fingerprints? Or do your crime industry connections suggest that you shouldn't do that?
I think in this case the deep pockets would mainly be on the side of selling more genetic testing, as opposed to selling less. After all the pocket holders themselves aren't being tested.
As well as the privacy of your ( possibly still unborn ) children.
Well, it doesn't help when techbros from 4chan and other 'techie'-linked spaces routinely troll these same journalists by suggesting that they should "learn to code", or something. I'm not saying that their envy is justified, but it seems that there's more than one side at fault here!
I’m not endorsing the campaign which is hurtful at a time when someone has just lost their job, but to interpret it as techbros holding coding up as the way of the future is a mistake. Most of these people are also skeptical of coding as a lasting career.
But this is the human condition. Every organization is prone to these kinds of things. And to some extent, every organization has to be self-interested and prone to value their own interests over those of anyone else.
Which isn't a statement of defeatism--it's worthwhile to curb this tendency, and to identify particularly bad instances of it. It's just that the media themselves are also subject to the human condition, and that despite pretending to be disinterested public servants, they have incentives of their own. And those incentives are only stronger and stronger due to the sheer desperation that the news industry finds itself in.
There's an old saying that you should never pick a fight with a man who buys ink by the barrel. The tech industry didn't just pick a fight with one of these men, it threatened the livelihood of all of them at once. So maybe, just maybe, we should price that in a little bit whenever we see yet another hit piece directed at the tech industry.
That says to me that if you don't take an aggressive regulatory supervision of the healthcare market, (literal) snake oil salesmen will come in and promise the world. It's one thing to let juicero fail because there's no critical health concern that happens when the product ultimately fails. When it's a device or service that impacts patient care, we have a moral obligation to ensure we are doing best to ensure we are positively impacting care.
I personally decided to throw our 23andme tests out, for a variety of reasons (health privacy being one), but one of them is health anxiety. It feels unnecessarily anxiety inducing to provide this info, in either case. If i have a mutation, I may live with some elevated fear of something inescapable that never materializes. If I get negative results, I may wonder “what about the ones they didn’t check?” Either way, I end up with less actionable information.
Kind of a psychological phenomenon here - more data in this case doesn’t necessarily result in more information, because interpretation matters so much in this arena.
I've not yet done this myself but am planning to do so later this year.
Why do people willingly provide DNA samples together with personal information?
Apart from that, I shouldn't need to register on their website to access my results. There could be unique, randomly generated URL on a scratch card in the kit, where the results will be put as soon as they are done with sequencing.
For 23andme, the discovery of relatives is optional. A user can choose to not receive any information about potential relatives, or to disclose minimal information, to allow messaging without names, or to disclose a name. I may be misremembering some of the granularity, but names do not have to be automatically disclosed.
but seems like a trend now, just to blindly copy what celebrities endorse so
more power to you folks who submitted your DNA, you can never take it back, and they have it forever.
Any crime your descendants or you commit in the future or the propensity to commit crime under the right psychosexual circumstances carefully driven by subliminal messaging, are fucked.
https://sacramento.cbslocal.com/2018/05/14/california-newbor...
I wonder if this had impact on the drop in crime rates during the 90s.
Imagine a carefully targeted campaign against genetically disposed to violence and allergy to education. You can sterilize entire 'hoods bye putting guns, drugs and alcohol there and just wait for the environment to infect all others.
Like considering the overwhelming prison population in the US is black or latino, you can't help but wonder at some grand conspiracy that's aimed at sorting out the unfit from the normal.
i A prominent and conspicuous limiting statement that the test provides only a preliminary test result that needs to be confirmed using an independent pharmacogenetic test without such a limitation prior to making any medical decisions. Alternatively, appropriate design verification and validation activities, including the generation of robust analytical data demonstrating appropriate analytical accuracy and reliability of test results for each genetic variant included in the test report, must be performed that demonstrate that the test can be used to make well-informed clinical decisions.
In other words, any test results (at least related to drug metabolism) require... confirmation with another test?
https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/...
2. FDA regulates marketing and claims that you can make for products including drugs/devices (but that whole regulatory framework is a story for another day). You need to have certain regulatory approval for formalized medical testing/reimbursement (remember that 23 and Me is targeting consumers, not traditional patients).
https://customercare.23andme.com/hc/en-us/articles/115004459...
How many zeros are we talking about? Does anybody offer the service?
https://www.dantelabs.com/collections/our-tests/products/who...
They sold out in about 6 hours.
Veritas offered $999 full genome sequencing since 2016.
My guess is that we should see a new regular/lower price later this year.
Americans have already agreed that when it comes to healthcare markets, more rather than less regulation is necessary for making clairvoyant decisions (ie Federal Food, Drug, and Cosmetic Act which created the modern FDA). I think there is clearly potential for policy reform, but the complete lazzie-faire economic model just simply doesn't apply to the healtcare market.
[1]. https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/...
And for what it's worth, this particular NYT article is pretty on point for their analysis as read by a bioinformatics PhD student.
> this particular NYT article is pretty on point for their analysis as read by a bioinformatics PhD student
Really? With stuff like "23andMe’s breast cancer screen looks at just a handful of places in the gene where mutations are known to appear. That’s like proofreading a document by looking at only a handful of letters"? Bioinformatics research background here, too, and as far as I know all of those screens scan particular sites and not a full sequencing -- because the sites are the only thing we have clinical evidence for anyway.
I don't doubt that there are more comprehensive screens on the market, but arguments like "only 2% of the population has these mutations" are rhetorically misleading without comparative details, like how much of the population has detectable mutations of any kind.
I think using an opinion page level of rigor to make arguments of this kind misleads some people, and leaves everybody else in a place of choosing whether to "trust the NYT brand" as opposed to providing them evidence.
Note: Paywall warning. But the uptodate article says the following.
"Direct-to-consumer BRCA testing — In March 2018, the US Food and Drug Administration (FDA) authorized the direct-to-consumer (DTC) company, 23andMe, to include BRCA testing as part of its Personal Genome Service Genetic Health Risk report [60]. It is important to note that the testing includes only the three BRCA Ashkenazi Jewish founder mutations and does not entail analysis of other potential variants in these genes. Pre- and post-test genetic counseling is not required for individuals interested in such DTC testing.
Any individual who receives a positive result from DTC testing should have it confirmed in a clinical lab. Although the likelihood of a false-positive result is very low, it is critical for the result to be confirmed and an individual, signed report should be provided to the patient.
An important concern related to BRCA DTC testing is that women at average risk for breast cancer may be falsely reassured about what the genetic testing results mean for their breast cancer risk and the continued need for routine, age-appropriate mammography screening. On the other hand, for women with a personal or family history of breast cancer who are candidates for genetic testing, testing only for the founder BRCA variants is incomplete, regardless of ancestry. Such women need complete BRCA gene analysis and are likely good candidates for multigene panel testing."
[1]. https://www.uptodate.com/contents/genetic-counseling-and-tes...
Edit: it's still bugging me that this doesn't describe the utility of the additional clinical screen more specifically. Is the point that even if false positives are rare, the treat path is informed by full sequence data? Would love additional insight.
These details are important to me because I think low cost tests can fill a public health niche that "only the most comprehensive test" strategies leave underserved. Any progress in those areas is likely to meet resistance, because it could bite into the margins of folks offering broader packages. So I am really interested in how both scientific and popular articles portray the tradeoffs.