[Hasz]

What a excellent, albeit strange, model. People pay you to analyze their valuable info, which you then aggregate and use to develop a drug and sell to others. It's almost exactly like trash -- people give you their valuable commodity (pay you to take it, in some cases!), you put it in a pile and then sell the mining rights down the line.

If my data is going to be used to develop drug royalties, I want a % cut. Not a free test, certainly not a test that costs $100. I realize I will never get it, but I can hope.

Drugs, when you analyze the successes, are unfathomably profitable. The R&D is horrifically expensive, but the end product is immensely valuable. 23andMe is in a bit of a race to pick all the easy fruit from the genetic tree to develop into drugs. All the upside, a much easier R&D path compared to the conventional "throw shit at the wall until it sticks" style.

[Beefin]

That makes zero sense, the effort is in deriving insights in producing something tangible - drugs. That's like saying you want a cut from all of Google's revenue because you use their search engine, or you want a cut from any service because they use the analytics from your use to improve their product.

[Hasz]

That's exactly what I'm saying. I recognize it's not practical, but that doesn't mean I'm going to change the criterion -- it's also why I chose not to upload data to 23andMe.

In Google and everyone else's case, I would argue it's a bit different. Google remunerates me with the best search engine in the world, excellent free email, etc. Other services improve the product, which I (generally) reap the benefits of.

On the other hand, your genetics are what they are -- I don't believe 23andMe is sending every participant a coupon for this new drug, although I might be wrong. Instead, all you get is a small sample of the 600k SNPs available, some shaky genetic inferences, and tabloid level ethnic data. You give up valuable data with huge upside for analysis of questionable integrity and limited actionability.

[dahinds]

23andme provides a service that improves as a result of our research program. Many 23andMe reports are now based entirely on 23andMe research. There's room to argue about the value of the services we provide, but I think the science is pretty solid. And 23andMe research is generally very well regarded in the scientific community; we've contributed to >100 peer reviewed publications and have dozens of active academic collaborations. There's no other genetic testing company with anything remotely comparable to our research program. Actionability is a really hard problem but I'd absolutely stand behind the integrity of what we do. In any case, no one is obligated to participate in our research program.

[Hasz]

From the privacy policy, effective jan 2020.

From the Privacy Highlight:

"We will not share your data with any public databases "

From the full policy:

"We may share some or all of your Personal Information with other companies under common ownership or control of 23andMe, which may include our subsidiaries, our corporate parent, or any other subsidiaries owned by our corporate parent in order to provide you better service and improve user experience"

I'm no lawyer, but it seems like the key word is public. Considering 23andMe reserves the right to share this data with its family of companies, and I'm unable to opt-out, it seems like all research is not totally avoidable. I won't comment any more about the validity of the science, it's not my field. However, I couldn't find any data about the error rate of the tests, which is surely non-zero. I'd love to know what SNPs they choose to evaluate, how they collect the phenotype data (the most valuable part of all!), etc.

In short, consumers give up huge troves of info, and pay for the privilege of doing so. What's more, the actual business model is turning this into drugs, of which they receive nothing in return. Most people expect a fun way to see they're 4% $ethnicity, not realizing the value in the data they freely give up to a private company.

I am no fan.

[bllguo]

your data is _not_ valuable per se. it only becomes valuable when aggregated.

[alehul]

> If my data is going to be used to develop drug royalties, I want a % cut.

For those saying this idea is unrealistic, I was at an accelerator in Cambridge a while back and met some folks working on a version of 23andMe that, in my opinion, mirrors what the Brave browser has done to ads.

You can opt into your data being aggregated, anonymized and used by pharmaceutical companies, and you'll be given a percentage of what they sell that data for (IIRC, it was north of 20% and below 50%).

As industries become more crowded and there's an increasing number of services for a consumer to choose from, these sort of arrangements will likely become more common.

[toomuchtodo]

It's really not that strange. No different than people paying $40k-$130k for Tesla vehicles that send data back with no compensation to help them improve their autonomy efforts, or users of social media products giving their content away for free (Facebook, Insta, Twitter, Reddit) thereby creating the platform's value. Lots of good business to be had taking something of little value and then selling for a greater value in some larger aggregate (which is even as low tech as your local metal recycling business; you want a cut of the revenue from the aircraft your aluminum ends up in?).

The consumer benefit is that it's only $100-200 for a 23andme selective sequence, versus the $1000 for a full sequencing someone like Veritas charges. It's brilliant that 23andme can turn health and ancestry curiosity into a pharma business, and they should be commended for their work.

[Hasz]

Yeah, don't really like that either. At least with the other services, the user arguably sees an improvement -- better community, better car, whatever. Your genetics are what they are; I doubt (but might be wrong!) 23andMe is sending out free drugs to all the participants.

I'm not sure how Veritas does it, but 23andMe only takes a few of the 600K SNPs available to analyze. PBS had a good bit on it, you can find it on YouTube. They release your raw data, but make no guarantee of accuracy, which is crazy considering some people take drastic, irreversible medical action (double mastectomy, hysterectomy for the BRCA mutation) based on the results. I'm sure they disclaim that, but crazy nonetheless.

[toomuchtodo]

The availability of the drugs is the benefit, not whether they are provided to you free or not. Fix healthcare policy if you want that reality.

[buboard]

More like ads. The entire internet is nowadays powered by free data. Soon drug R&D will be similar. OTOH, that's a good thing, i would like to see the industry growing fast. At some not too distant point, people should start being compensated for participating in DNA studies, under rules no different than any other medical donation really.

[sjg007]

I think there is a startup out there with that idea. Basically they sequence you but you can choose what analyses get run on your data.. and can get paid to have your data analyzed.