I know this isn't a popular stance here but I take a number of issues with this article
> As the infamous pharma bro Martin Shkreli demonstrated, pharmaceutical companies can and will make life-saving drugs prohibitively expensive to juice their bottom line.
I agree that pharma pricing is a problem, but framing the public debate around the issue with Martin shkreli basically ensures the conversation will be based on sensationalism and appeals to emotion, rather than facts. As it stands now, the public doesn't understand pharma pricing so can't assess how likely any proposed legislation is to actually lower price. That enables the pharma lobby to work behind the scenes to make sure any govt actions sound important but are toothless. There are many pharma pricing cases that are more egregious, look at acthar gel as an example. If you want a non-biased, economics driven assessment of value based pricing for drugs look at ICER or NICE
> This means that 23andMe customers will, in effect, be charged twice for any potential “innovative new medicines” their DNA helps produce. The first time they paid for the DNA sequencing service; the second time they pay for the medicine that it helps create
This conveniently ignores the hundreds of millions of dollars per medicine that pharma companies will have to invest to get a drug to market. Pharmas r&d productivity is on a steady decline. So GSK will probably spend a ton of money developing drugs based on this data, and it's likely that they won't end up with enough meaningful new medicines to offset the cost of research. I can elaborate if people want
> Another alternative would be for 23andMe to partner with non-profit public programs, such as the National Institute of Health’s precision-medicine initiative
In which case you'd be giving your data to Google, who works with this NIH initiative to analyze data [0]. Personally I'd rather GSK have my data than Google -- at least GSKs entire business model isn't selling personal data
> Ostensibly, the genetic information is going to be used for “research and development of innovative new medicines and potential cures.”
Pure evil.
Is there an alternative where I can get my DNA analyzed for free while still granting access to it to scientific research while trusting that the DNA won't be leaked in a couple of years?
Due to the nature of DNA your anonymity is directly reliant upon the anonymity of everybody you are related to, with a drop in accuracy proportional to the distance of the relationship.
Your DNA may be out there without any link to you. However if your brothers DNA is also out there but is however linked to him, then by comparison the fact that your DNA is a sibling of his, is easily determined. In fact this is the whole point of the current "Find you ancestors" craze.
Anonymization doesn't work in practice (people are bad at it and don't understand how to do it), and it definitely doesn't work on DNA. So in order of claims: You shouldn't trust it was done well and if someone claims that they did this for your DNA they are lying. Why wouldn't you want to opt-out from having some of your most sensitive information used by someone who is willing to lie to get access to it?
The alternative to "they are lying" is "they are too incompetent to make the claim" and I'm honestly not sure which is more worrying. You can take your pick, they're both more or less equally terrifying.
Agreed. However, the NIH, as mentioned in the article, is trying to accomplish similar goals.
I would think though, that the private corporation compared to a non-profit government agency is going to be faster at finding a solution given the same data. This will of course come with a $$$ cost.
You aren't naive, almost all medicines require for profit funding to get to market. In 2017 92% of new approved drugs were owned by companies. Non profits don't have the money or infrastructure
Could your question be generalised as “why would I want to opt out of X if there is any potential to help beneficial Y” ?
For me the issue is not that Y will be good, more that there are countless of potential research outside of Y that can’t be restricted and I wouldn’t agree with.
23andme for instance is not saying that their data will only be used for research that most people agree with. There is no “don’t be evil” mantra they harbor. And by definition there can’t be anything that 100% agree with and they can’t ask everyone for every use.
In that respect I think people should be able to contribute their data themselves to Y, without a man in the middle choosing where else the data should go. Short of that not contributing anything seems a sensible position.
What kind of organization would you trust with your genetic data? The U.K. Biobank, one of the largest government led sequencing efforts, uses a big pharma company called regeneron to sequence many of the patients that participate. Nearly all FDA approved medicines are funded by private pharma companies, so any innovation that becomes a medicine will likely pass through pharma s hands
This post made me think of George Churches new startup aimed at making research studies like this opt-in and pay money to participants, while making it easier for researchers to find large datasets for their research. While their bockchain-based platform seems overhyped, if anyone is in a position to accomplish this, it's George Church, so maybe they stand a chance at changing the way things are done in that industry.
> As the infamous pharma bro Martin Shkreli demonstrated, pharmaceutical companies can and will make life-saving drugs prohibitively expensive to juice their bottom line.
I agree that pharma pricing is a problem, but framing the public debate around the issue with Martin shkreli basically ensures the conversation will be based on sensationalism and appeals to emotion, rather than facts. As it stands now, the public doesn't understand pharma pricing so can't assess how likely any proposed legislation is to actually lower price. That enables the pharma lobby to work behind the scenes to make sure any govt actions sound important but are toothless. There are many pharma pricing cases that are more egregious, look at acthar gel as an example. If you want a non-biased, economics driven assessment of value based pricing for drugs look at ICER or NICE
> This means that 23andMe customers will, in effect, be charged twice for any potential “innovative new medicines” their DNA helps produce. The first time they paid for the DNA sequencing service; the second time they pay for the medicine that it helps create
This conveniently ignores the hundreds of millions of dollars per medicine that pharma companies will have to invest to get a drug to market. Pharmas r&d productivity is on a steady decline. So GSK will probably spend a ton of money developing drugs based on this data, and it's likely that they won't end up with enough meaningful new medicines to offset the cost of research. I can elaborate if people want
> Another alternative would be for 23andMe to partner with non-profit public programs, such as the National Institute of Health’s precision-medicine initiative
In which case you'd be giving your data to Google, who works with this NIH initiative to analyze data [0]. Personally I'd rather GSK have my data than Google -- at least GSKs entire business model isn't selling personal data
[0] https://verily.com/projects/precision-medicine/precision-med...