Obviously, there are perfectly accurate and FDA approved tests for BRCA1 and BRCA2. The point is 23andMe don't do these tests. Therefore, how can you argue that their testing for lowly penetrant poorly characterised ultra-rare risk loci (which means most of the positive tests will be errors, as in this case) is somehow a great benefit to humanity, if they don't offer by far the most common, clinically significant and life saving genetic test there is?
As I said, the answer is of course that 23andMe are acting in their own interests. Anyone paying for the privilege to give away their genetic information to a private company should realise this.
> why would their Illumina chips look for those variants in the first place given that they are rare and they can't use them?
And testing for ultra rare lowly penetrant AD loci is more useful?
Your entirely tangential example from DeCODE makes no sense. DeCODE was not a user pays self-referred program. It was a research project.
If you read my original comment, I did not state in past tense that 23andMe made billions (I presume you are merely careless in reproducing what I said, rather than disingenuous). My comment specifically was 'Meanwhile 23andMe makes billions selling the data to pharma?', indicating that there is potential for them to make billions or that they are in the process, not yet complete, of making billions. Their valuation by VC funding is entirely supportive of that potential and process. The CEO has come out many times stating their business plan is to sell population genetic data to pharma.
> Therefore, how can you argue that their testing for lowly penetrant poorly characterised ultra-rare risk loci (which means most of the positive tests will be errors, as in this case) is somehow a great benefit to humanity, if they don't offer by far the most common, clinically significant and life saving genetic test there is?
How can one thing be good if another thing is even gooder?
> As I said, the answer is of course that 23andMe are acting in their own interests. Anyone paying for the privilege to give away their genetic information to a private company should realise this.
It is not a negative-sum game. It is from the self-interest of the butcher we are able to buy dinner, not his benevolent regard for humanity. 23andMe can do a lot of good while seeking to do well.
> And testing for ultra rare lowly penetrant AD loci is more useful?
Apparently. Illumina and/or 23andMe chose to put it on the chip, so they apparently felt it was worthwhile.
> Your entirely tangential example from DeCODE makes no sense. DeCODE was not a user pays self-referred program. It was a research project.
My point there was a comparison of the regulatory regimes that genetics companies (DeCODE is not a 'research project', is a former NASDAQ-traded (DCGN)corporation which is now private post-bankruptcy, which did in fact use 'user pays self-referred programs' in addition to the national database they were hired for) are under such that even when they know with high accuracy about very serious mutations like BRCA, which you brought up as a huge dereliction, they may still not be allowed to tell people, which illustrates the incoherence and harm of the medical system in regards to genetic data; given the question about whether they would even be allowed to tell people (like you think they should not be allowed to tell people about AD loci), why would they spend resources testing for it?
> My comment specifically was 'Meanwhile 23andMe makes billions selling the data to pharma?', indicating that there is potential for them to make billions or that they are in the process, not yet complete, of making billions
Oh, so the rest of that paragraph where you were contrasting how 'Meanwhile 23andme makes billions' to things that had already happened or were happening were also just 'potential' too? I see. How very careless (not disingenuous) of me.
> How can one thing be good if another thing is even gooder?
Why bother to be flippant this far down a thread on HN?
> It is not a negative-sum game.
I remain surprised that you should be quite so sanguine about the mutual benefit of giving away data to tech companies. 23andMe and others recently announced they would ask for explicit consent before sharing DNA information with other parties. How a genomics company could go on for this long without guaranteeing the privacy of its users is baffling.
> Apparently. Illumina and/or 23andMe chose to put it on the chip, so they apparently felt it was worthwhile.
'Worthwhile' and 'marketable' to a consumer audience are not equivalent, as I have repeatedly pointed out with BRCA testing.
> My point there was a comparison of the regulatory regimes that genetics companies...
You referenced the sequencing of Icelanders, which was indeed a research project (you've read the papers surely) and not a self-referred program, regardless of what else DeCODE does or is. You can't make a point about regulatory conditions in that setting and transfer it to consumer testing. But are you trying to say that it isn't worth testing BRCA because DCT companies might not be allowed to tell people the result, even though 23andMe are currently offering BRCA results?
> Oh, so the rest of that paragraph...
I would suggest that your ongoing efforts to tell me what I meant in my comment are better spent elsewhere. Particularly since as a privately held company, we don't know 23andMe's revenue, what deals have been made or what their future plans and projections are. What we do know is how much VC funding they have received, and the return on investment that VC's expect.
Obviously, there are perfectly accurate and FDA approved tests for BRCA1 and BRCA2. The point is 23andMe don't do these tests. Therefore, how can you argue that their testing for lowly penetrant poorly characterised ultra-rare risk loci (which means most of the positive tests will be errors, as in this case) is somehow a great benefit to humanity, if they don't offer by far the most common, clinically significant and life saving genetic test there is?
As I said, the answer is of course that 23andMe are acting in their own interests. Anyone paying for the privilege to give away their genetic information to a private company should realise this.
> why would their Illumina chips look for those variants in the first place given that they are rare and they can't use them?
And testing for ultra rare lowly penetrant AD loci is more useful?
Your entirely tangential example from DeCODE makes no sense. DeCODE was not a user pays self-referred program. It was a research project.
If you read my original comment, I did not state in past tense that 23andMe made billions (I presume you are merely careless in reproducing what I said, rather than disingenuous). My comment specifically was 'Meanwhile 23andMe makes billions selling the data to pharma?', indicating that there is potential for them to make billions or that they are in the process, not yet complete, of making billions. Their valuation by VC funding is entirely supportive of that potential and process. The CEO has come out many times stating their business plan is to sell population genetic data to pharma.