Live data from Hacker News

FDA Authorizes Ten 23andme Genetic Health Risk Reports

blog.23andme.com

171–180 of 195 posts

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#171
post #19

My opinion is that this test is useless at the least and dangerous at the most. It provides information that in almost the totality of the cases no one can correctly interpretate and transform in actionable health advice. Not scientists, not doctors, much less consumers. But it is sold as a cutting edge scientific resource that will improve your life. It wont. Not even increasing the chance that you might avoid somet…

My entire family dies of strokes, and 23&M identified me as having a blood clotting disorder. This is extremely valuable to know in terms of basic lifestyle modification (e.g. being even more sensitive to deep vein thrombosis on long flights), and in being able to discuss prior to things like surgery.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#172
post #167

Earlier quoted context omitted.

Yah. I've got a 50% chance of having Huntington's. When my parent was first diagnosed with it, me + all siblings were immediately going to get screened. Half of us actually booked to get the test done. But we later cancelled our screenings, and we're all now rather we didn't know. As I understand, genetic counselling in the case of HD is people telling you over and over again not to get tested. One of the constraints…

>One of the constraints on fertility treatment if you're at risk is that you can't have any procedure that removes the potential baby's right to choose whether or not to be screened. Can you explain that a little more?

There are fertility treatments that include genetic testing of the fetus that would indicate Huntington's.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#173

Earlier quoted context omitted.

This is the purpose of Genetic Counselling. A friend of mine does this and I can certainly see the value in having someone who understands the science walk you through the outcomes.

I see genetic counselors as gatekeepers to the information about our own bodies. Just give me my results and let me figure it out for myself. If some people want the service of a counselor let them get it but don't bar people from their own bodies. We research other issues ourselves and the world hasn't ended. Imagine if you weren't allowed to read the Bible but had visit a "bible counselor" if you wanted to find out…

You can absolutely analyze the data yourself, a genetic counselor is a value-add that can provide an ethical medical recommendation based on the data.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#174
post #65

Earlier quoted context omitted.

So what did you do with all the data?

I archived it to cloud storage because I've decided that this raw data has no utility except to waste my time.

Then why pay so much money for the exhaustive test in the first place when other tests are on the market? (Ownership over the results maybe?)

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#175

Earlier quoted context omitted.

I see genetic counselors as gatekeepers to the information about our own bodies. Just give me my results and let me figure it out for myself. If some people want the service of a counselor let them get it but don't bar people from their own bodies. We research other issues ourselves and the world hasn't ended. Imagine if you weren't allowed to read the Bible but had visit a "bible counselor" if you wanted to find out…

You can absolutely analyze the data yourself, a genetic counselor is a value-add that can provide an ethical medical recommendation based on the data.

My friend got a genetic test for her son and they refused to give her the results until she saw a genetic counselor.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#176

I'm surprised to see all the fear-mongering in this thread. We leave genetic material behind everywhere we go. 23andme analyzes only a small subset of one's DNA. The most important thing to realize about genetics is that very few health conditions (and even traits) are highly correlated with a specific genotype. Some are, but the reason something like 23andme hasn't revolutionized health is because the correlations f…

Your comment could also be taken as an argument for being a late-adopter of commercial genetic testing services: 1. The AUC (predictive power)for most traits is currently very weak 2. The genetic privacy protection landscape is currently quite volatile Taken together this puts the consumer in the situation of having data that is of middling utility for them personally, but is of great potential utility for the testin…

These are good points. I'll respond with a few things that I think are relevant:

> an argument for being a late-adopter

Definitely. I was an early adopter of 23andme, and there is value to 23andme's research arm when a customer fills out the surveys, but the utility is low and comes predominantly in the form of entertainment. I'm the most neanderthal of everyone in my family who has signed up, which is a mark of pride.

> A small increase over the average population susceptibility for trait X is often non-actionable for you personally, but over several traits might be sufficient to shift you into a different insurance risk class.

While this is quite true, and would be very worrisome, I think the basic properties of heredity make it unlikely that the dystopian outcome you describe will occur. Here's what I think is the logical argument:

We are all very genetically similar. There are thousands of 5th, 6th, 7th, and more distant cousins of mine on 23andme. Chances are most of the population descended from Europeans are Broad, ethnicity-based risks are already known/used by insurers... things like sickle-cell risk, diseases more common among Ashkenazi jews, etc.

While there are many health conditions that correlate with genetics, their presence is dominated by chance. Thus we all have similar incentive for adverse selection of insurance, and hence insurance companies have little to gain by fragmenting their risk pool on the basis of tests with low predictive value.

Moreover, since so many people reproduce and thus take on financial responsibility for the genes of their children (which are subject to both hereditary risk and mutation risk) chance becomes an even more dominant factor in risk, and amplifies the incentive to create the largest risk pool possible because the risks cannot be predicted with high levels of accuracy. There have already been extensive, large data set statistical analysis of full genomes for predictive information about the top 5 most costly diseases. If there was going to be a large, statistically significant find, we'd have already heard about it.

The other side of this coin is that even people whose genetic scan shows reduced risk for all of the expensive diseases will still get those diseases with enough frequency that segmenting the risk pool will not make financial sense for insurers.

The situation we had a few years ago with respect to expensive pre-existing conditions was actually far worse. Type 1 diabetes is weakly hereditary and is dominated by chance. If you get type 1 diabetes you're looking at a few hundred dollars per month of cost for test strips, insulin, etc., to the point where for a middle class or lower middle class person, the disease can be financially crippling. Most people would prefer that the risk of randomly occurring, expensive diseases be spread among everyone, so that we'd all pay $1 more so that the person who gets unlucky and has type 1 diabetes gets the strips for free.

Yet in spite of this, even with acknowledgement of pre-existing conditions, the scenario remains. The insurance/healthcare industry has not managed to create the proper financial incentives that would insulate someone who drew the short straw and got type 1 diabetes from financial hardship (via pure insurance)... while it has failed to create any financial disincentive for adopting many behaviors that are nearly guaranteed to increase healthcare costs.

So I have hope that a better (broader, more public) understanding of genetic risk, random chance, and behavioral risk will help the insurance industry deliver products that allow all of us to save money based on things we can control, and not to be penalized for things we cannot control.

Neither of the extreme ideas (that there is strong genetic determinism for disease and healthcare cost or that there is zero behavioral/environmental impact) are true.

Also, fwiw, I don't think any of us would tolerate living in a society where people had to consider the genetic scan of a potential mate before deciding whether a relationship made sense financially. I realize this is the case today in some minority populations who have had (for historical reasons) lots of in-breeding) but over time the impact of that will be reduced.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#177
post #96

Earlier quoted context omitted.

Yes, that's exactly what they are saying. That's how they make money. And if that concerns realize that your doctor sells your EMR data, your pharmacy sells your prescription data, the labs sell your blood work data too. https://genos.co/ will do a 75x whole exome sequencing (very good quality even for a clinical test) for $500 with a good customer experience and they don't sell your data. You can then feed the data…

> 75x whole exome sequencing (very good quality even for a clinical test) You say that, but at the lab where I work, that level of quality would be a big fat fail - re-sequence the sample and get more data. They further describe their sequencing quality as "≥ 90% loci with 20x or more coverage AND ≥ 99% loci with 1x or more coverage". That's poor quality - very poor quality. We aim for 97% coverage at 20X and routine…

Is your lab research or clinical? Genos coverage seems to be similar to GeneDx. I am told GeneDx is excellent on the clinical side. https://www.genedx.com/genedx-blog/exome-sequencing-at-gened...

Separately, can I get in touch with you somehow? I am dealing with clinical genetics as a patient right now, and would love to get some advice.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#178

Earlier quoted context omitted.

Yeah, for now but in general, that's useless. They have the leverage to change the policy whenever they want as long as they notify the customers at the login screen and via email. And hey, they can change the policy to not even notify anyone. And of course, they can be bought out and the customer data is part of the company value so there's that. Unless they provide an anonymous way of consuming their product I woul…

Not only your genes worthless, since everyone has genes, but you leave them everywhere, like when you get a haircut. Might be important if you were planning on a life of crime, or if you owe someone child support. But for the moment there's no good way to use them to make money off you.

> Might be important if you were planning on a life of crime

I'm very sad reading statements like this on hackernews.

Is that really an argument when it comes to privacy? Especially these days?

'crime' is a generic term which can change depending on who's in charge of the country.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#179

> For several years, 23andMe has worked on demonstrating that its reports are easy to understand and analytically valid... I guess these are different reports, but I know a genetic counsellor who describes 23andMe's carrier screening tests as "the bane of their existence". Those reports seem not-so-easy to understand based on the patients she sees. One problem is that they warn that your offspring are at high risk fo…

> I know a genetic counsellor who describes 23andMe's carrier screening tests as "the bane of their existence". Do you really think a product can be built (for a reasonable price) which ensures that your genetic counselor does not get stupid questions from the consumers of the product? That's like saying .

I'm not sure how I feel on this because I see both sides. If you're a doctor, you have to spend a lot of time addressing questions that are often based on other situations/conditions or aren't accurate because they were sourced on the web. At the same time, doctors were used to not getting questioned much and being able to do whatever they want for the most part. Last time I went in due to sickness they tried to do an x-ray which I declined. Many health care providers play the billing game and that's what they know. Now they have to listen to the patient and have more dialogue. Sometimes they are questioned. It's a shift. I think it's a good thing that people are asking more questions and doing research on their own. In real estate - automated valuations like Zillow provides are the "bane of their existence". Although many times it helps them because people want to seek an agent to sell because they looked up the Zestimate. If you're a professional - handling questions and concerns shouldn't be an issue.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#180

Earlier quoted context omitted.

Not only your genes worthless, since everyone has genes, but you leave them everywhere, like when you get a haircut. Might be important if you were planning on a life of crime, or if you owe someone child support. But for the moment there's no good way to use them to make money off you.

> Might be important if you were planning on a life of crime I'm very sad reading statements like this on hackernews. Is that really an argument when it comes to privacy? Especially these days? 'crime' is a generic term which can change depending on who's in charge of the country.

I mean, personally I think everyone should be prepared to start a life of crime. But hiding your genes is like trying to hide what you look like - basically impossible. Privacy is about not being able to associate people's actions with them, not hiding that people exist in the first place.
Post reply on HN