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FDA Orders Genetic Testing Firm 23andMe to Halt Sales

79 pointsby wikiburnerover 11 years ago

11 comments

djjoseover 11 years ago
The crux of their troubles comes from this paragraph in the Warning Letter: &quot;However, even after these many interactions with 23andMe, we still do not have any assurance that the firm has analytically or clinically validated the PGS for its intended uses, which have expanded from the uses that the firm identified in its submissions. In your letter dated January 9, 2013, you stated that the firm is “completing the additional analytical and clinical validations for the tests that have been submitted” and is “planning extensive labeling studies that will take several months to complete.” Thus, months after you submitted your 510(k)s and more than 5 years after you began marketing, you still had not completed some of the studies and had not even started other studies necessary to support a marketing submission for the PGS. It is now eleven months later, and you have yet to provide FDA with any new information about these tests.&quot;<p>The FDA, while being a pain in the rear at times, will actually work with you to meet compliance. But you have to show work and be continually in touch with them and show progress (and document everything according to your own procedures, complying to regulations of course). You can&#x27;t just say you&#x27;re working on compliance and then not follow through and show evidence. The issue for 23andMe is the on-label use of the product &quot;in the diagnosis of disease or other conditions or in the cure, mitigation, treatment, or prevention of disease, or is intended to affect the structure or function of the body.&quot; They market the product this way. If you want to market your product as such, you have to show proof to the FDA and receive approval to label the medical product in this manner. It looks like 23andMe is either not working towards compliance (and is misleading the FDA) or is doing a terrible job documenting their work towards compliance and keeping the FDA abreast (my guess is this is what&#x27;s happening). That in itself will get you in trouble, but then expanding your marketing for even more on-label use of the product - which hasn&#x27;t been submitted to the FDA apparently - while at the same time not having FDA approval for the original use is just plain stupid.
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bclover 11 years ago
From the 23andme TOS:<p>&quot;You should not change your health behaviors solely on the basis of information from 23andMe. Make sure to discuss your Genetic Information with a physician or other health care provider before you act upon the Genetic Information resulting from 23andMe Services. For most common diseases, the genes we know about are only responsible for a small fraction of the risk. There may be unknown genes, environmental factors, or lifestyle choices that are far more important predictors. If your data indicate that you are not at elevated genetic risk for a particular disease or condition, you should not feel that you are protected. The opposite is also true; if your data indicate you are at an elevated genetic risk for a particular disease or condition, it does not mean you will definitively develop the disease or condition. In either case, if you have concerns or questions about what you learn through 23andMe, you should contact your physician or other health care provider.&quot;<p><a href="https://www.23andme.com/about/tos/" rel="nofollow">https:&#x2F;&#x2F;www.23andme.com&#x2F;about&#x2F;tos&#x2F;</a>
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patrickmclarenover 11 years ago
My comment from the same story on reddit.<p>For those protesting this decision, carefully read the following:<p>&gt; However, even after these many interactions with 23andMe, we still do not have any assurance that the firm has analytically or clinically validated the PGS for its intended uses, which have expanded from the uses that the firm identified in its submissions. In your letter dated January 9, 2013, you stated that the firm is “completing the additional analytical and clinical validations for the tests that have been submitted” and is “planning extensive labeling studies that will take several months to complete.” Thus, months after you submitted your 510(k)s and more than 5 years after you began marketing, you still had not completed some of the studies and had not even started other studies necessary to support a marketing submission for the PGS. It is now eleven months later, and you have yet to provide FDA with any new information about these tests. You have not worked with us toward de novo classification, did not provide the additional information we requested necessary to complete review of your 510(k)s, and FDA has not received any communication from 23andMe since May. Instead, we have become aware that you have initiated new marketing campaigns, including television commercials that, together with an increasing list of indications, show that you plan to expand the PGS’s uses and consumer base without obtaining marketing authorization from FDA.<p>It appears that 23andMe is and has been aware of this situation for quite some time. In fact, the FDA has devoted significant time to aiding 23andMe in their process to compliance:<p>&gt; As part of our interactions with you, including more than 14 face-to-face and teleconference meetings, hundreds of email exchanges, and dozens of written communications, we provided you with specific feedback on study protocols and clinical and analytical validation requirements, discussed potential classifications and regulatory pathways (including reasonable submission timelines), provided statistical advice, and discussed potential risk mitigation strategies.<p>The FDA in fact proposed a relatively simple solution, which was related to the labeling of the product.<p>&gt; FDA has spent significant time evaluating the intended uses of the PGS to determine whether certain uses might be appropriately classified into class II, thus requiring only 510(k) clearance or de novo classification and not PMA approval, and we have proposed modifications to the device’s labeling that could mitigate risks and render certain intended uses appropriate for de novo classification.<p>Please keep in mind the scenarios in which the FDA attempts to avoid, in this situation. Particularly, a layman could consider their 23andMe results to be conclusive evidence for&#x2F;against particular diseases and conditions, regardless of the respective error bounds for the data, and take matters into their own hands or simply prefer their results over the advice of medical professionals. Sure, there are T&amp;C on 23andMe which state that this product should not be used in these purposes, this labeling is exactly what the FDA wants to improve. Limitations of assurance or intended use cases for products of this nature should be clearly labeled, and in a consistent manner. A startup (although 23andMe could be considered to be well beyond that stage) should not entrusted to make these decisions alone, and in fact, we do not have one such independent entity within this space, it is a growing arena within which multiple such entities are competing. It is not their business to care about other use cases, it is their business to stay in business.<p>A particular paragraph on 23andMe&#x27;s homepage says &quot;Understand your genetic health risks. Change what you can, manage what you can&#x27;t.&quot; I do see many individuals in the Nootropics&#x2F;Quantified Self community interpreting their own results and indeed taking matters into their own hands. Okay, so perhaps these individuals may be of above average intelligence and are capable of behaving rationally, but this desire to improve oneself is not limited to our circle. Believe it or not, most of the population would love to improve in one aspect or another. We should be very careful in what &#x27;gifts&#x27; we present to society, especially gifts of this nature.
shubbover 11 years ago
The problem with 23andmMe is that genetics can&#x27;t currently tell us much about our risk of developing common genetic diseases.<p>Some diseases are caused by a single gene. These are rare because people with a dominant copy of that gene are less likely to reproduce, so they are mostly deselected. Many of these monogenic diseases have a pretty major effect. You know if you have them (and probably died in childhood). Pre-natal genetic counseling is where finding these is useful.<p>Most of the diseases 23andMe talks about are caused by multiple genes (in combination with the environment). The interactions between these genes are often really complicated, and typically the number of genes involved is huge (and the actual contribution of each gene to risk is very small). This has made investigation a nightmare - even the most understood genetic diseases, we only know about say 10-20% of the genes that make up the genetic part of the risk, which may only be 40% of the total risk.<p>So 23andMe sees you have 1 of the 100 genes that we identified as contributing to a disease. That means you have 1% of 20% of 40%, which is really nothing to get excited about.<p>I know 23andMe tries to communicate this, but they are also trying to run a buisness. If they stood up and said &#x27;yeah, we can do some tests, and they really won&#x27;t tell you anything worth knowing&#x27;, they would get no press coverage. But anything else is... carefully not lying, rather than being honest.<p>I read other commenters here, who say things like &#x27;Well it&#x27;s a nice compliment to getting a blood test&#x27;, and get the feeling they think these tests mean shit.
taspeotisover 11 years ago
Previous discussion <a href="https://news.ycombinator.com/item?id=6794122" rel="nofollow">https:&#x2F;&#x2F;news.ycombinator.com&#x2F;item?id=6794122</a><p><pre><code> 317 points by jefffoster 14 hours ago | flag | cached | share | 377 comments</code></pre>
DigitalSeaover 11 years ago
Completely understandable and it&#x27;s a fair point people might undergo unnecessary surgery as a result of a false positive (like having breast tissue removed preemptively after false positives for chances of contracting breast cancer). 23andMe is a nice idea, but you can&#x27;t beat an old fashioned regular trip to the doctor and blood test to check for these things.
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dangeroover 11 years ago
Has 23andMe told their side of the story yet? The FDA&#x27;s press release made it sound like 23andMe was very negligent, but there has to be more to it than that. I can&#x27;t imagine a company just ignoring the FDA&#x27;s requests.
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rossjudsonover 11 years ago
When I read the FDA press release, it states that 23andMe must cease <i>marketing</i> their product. I don&#x27;t see where it says that they must stop selling it. If I&#x27;m right about that, they&#x27;re free to continue selling the product but have to stop their public statements about it, until the FDA grants them leave to do so.
snitkoover 11 years ago
FDA as always sticking their nose into something they shouldn&#x27;t. Let the people decide whether they want to use this particular service or not. People ought to be free to choose. Otherwise it&#x27;s not consumer protection, it&#x27;s consumer dictatorship.
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Michael_Murrayover 11 years ago
Of course this happens the week after I submit my sample.... ;-)
jacoblylesover 11 years ago
I&#x27;d rather see them shut down the FDA than 23andMe
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