Re:23andMe to share customer gene data with GlaxoSmithKline ...
by tomcooks on Tuesday December 17, 2019 @04:06PM
(#21818837)
> If selling the DNA I provided as part of a research dataset (that I provided without knowing who would be doing the research, but knowing it'd be someone because that's how research works) cures Parkinson's, I'm on board.
And that's the best case scenario, the worst case scenario is that your data is used to increase your insurance and healthcare rates.
Moreover, it normalises crappy corporate behaviour.
Re:23andMe to share customer gene data with GlaxoSmithKline ...
by taneq on Tuesday December 17, 2019 @02:22PM
(#21817582)
Hey and that's cool but you can't make that call for other people. That's the whole thing about consent and why it's important.
Re:23andMe to share customer gene data with GlaxoSmithKline ...
by shadowgovt on Tuesday December 17, 2019 @03:02PM
(#21818094)
But the question was express consent. I'm willing to trust 23andme to pass the data to whatever research team has the resources to make progress (that was certainly my intent, at least, in signing over consent to them in the first place; I don't know enough about medical research to have an opinion on the details of who does the work, and I delegate that responsibility to 23andme).
Re:23andMe to share customer gene data with GlaxoSmithKline ...
by hedvig on Tuesday December 17, 2019 @01:34PM
(#21816909)
And what percentage of your net-worth and/or your insurers bearance would you be willing to commit to the yearly treatment they'll come up with (not a cure)?
Re:23andMe to share customer gene data with GlaxoSmithKline ...
by mortenjorck on Tuesday December 17, 2019 @02:53PM
(#21817965)
The idea that pharmaceutical companies focus on treatment at the expense of cures is inaccurate. Not because they’ve decided to put the greater good ahead of profits, but because they realized they could price breakthrough cures to match the customer LTV of chronic treatments.
Novartis recently won approval for a cure to a rare genetic disorder, priced at two million dollars: https://www.reuters.com/article/us-novartis-genetherapy/nova...
Re:23andMe to share customer gene data with GlaxoSmithKline ...
by pertymcpert on Tuesday December 17, 2019 @01:40PM
(#21817004)
I guess everything because Parkinsons is a catastrophic illness from a quality of life perspective.
Re:23andMe to share customer gene data with GlaxoSmithKline ...
by shadowgovt on Tuesday December 17, 2019 @02:23PM
(#21817600)
(a) I have no reason to believe at this point, a priori, that Parkinson's isn't curable (Clarke's First Law)
(b) To address that issue, I vote for politicians who advocate for radically restructuring how healthcare is paid for in the US to minimize incentives to gouge unlucky individuals
I'm certainly not doing anything to cure that disease. Strict privacy advocates aren't doing something to cure that disease (I guess they might be, but how would I know, they don't talk about themselves much ;) ).
I value a cure for Parkinson's more than I value my privacy. If selling the DNA I provided as part of a research dataset (that I provided without knowing who would be doing the research, but knowing it'd be someone because that's how research works) cures Parkinson's, I'm on board.