GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial, upsides are optional. They need to make that money back somehow.
If my worthless genomic data contributes to a drug that one day helps even one other person, I'm fine with this.
Would I prefer all this data be free and open? Sure. Failing that, would I want to hold onto it? No. I'd still rather some mega evil pharma have it and be able to develop some overpriced medication that may one day be genericized. It's not doing me or anyone any good just sitting in my body.
Hell, I'll spit for anyone wanting to do research, for profit or not.
I think there are very few true "good guys" in the world. But if mega evil pharma corp has even a 1% chance of accidentally doing some tiny good as a byproduct of their evil... that's already more than would've happened if 23andme didn't share it with them. It's cool with me if they make some money in the process. My DNA isn't some creative work that I need royalties on. What nature giveth, I spiteth.
No kids and never will (vasectomy). Parents couldn't care less. They were intrigued by the ancestry stuff though. They're not long of this world anyway and probably won't live to see genetic medicines become an everyday reality :(
My partner's bigger family also contributed a lot of their DNA to this or similar services. I'll have to ask her what they think of sharing it with third (fourth?) parties. Be an interesting data point at least. I feel like the HN crowd holds a lot of uncommon opinions (not good or bad, just different from most people I know IRL).
Ok, that makes you a minority in the sense that I think that the potential negative fall out from your decision is limited enough that you were entirely free to make it. But the bulk of the people that sent their family data to 23andme isn't that well informed and likely has no idea about the potential for abuse of such data.
Maybe it is the 'dark side' in me or maybe it is simply seeing so many corporate abuses over a lifetime in IT that I can't see beyond the abuse to the possible good. The fact that it has Google backing is one major strike against it, as is the fact that they were going to commercialize the data itself right from the get-go whilst giving their paying customers something the amounted to expensive infotainment. It's clear that they wanted the data, not clear that there would be benefits to the participants, the data returned is just too coarse for that and akin to doing a lot of screening without symptoms, a practice that the medical profession has warned against repeatedly.
I don't disagree with what you're saying (that people don't always understand the implications of their casual dealings with big evil corps).
But can I offer another perspective, one of potential differences in values?
Privacy, for me, isn't a super high concern. Having some is nice, but it's never my top consideration. (I know this skews against the dominant HN sentiment, and Slashdot's too before it. That's okay.)
Science, however, IS huge for me -- even when the science is done by sub-optimal orgs like your Big Evil Corp du jour. When I learned that Google owned 23andme, my reaction wasn't one of horror.
Instead, it was "Oh cool! Maybe they'll actually have the resources to correlate this with all their other data on me." I then proceeded to sign up for Google Health, Google Fit, etc., and made sure to upload my health readings to their servers in the explicit hope that they would be able to merge it with 23andme and other data. My dream was that one day they would be able to identify genetic markers not just for health and lifestyle stuff but also behavioral data, like my YouTube preferences and Gmail conservational styles.
Gattaca to me was a utopia, not a dystopia.
I know that's probably not a common viewpoint. But I was really excited by the possibilities, and it doesn't bother me in the least that Google knows so much about me. I just wish they'd do something useful with all of it.
FWIW, I just asked my partner about the data sharing. She said she's fine with it and would opt-in if given the choice. Most of her family too (many were early adopters of genetic testing). One individual in particular skews conservative and is conspiracy-theory-prone and would probably not, though.
I wonder how much of this preference is political or personality or similar. Would be interesting to plot privacy needs vs the Big 5 personality test, maybe. But how would you get participants? Lol.
> It's clear that they wanted the data, not clear that there would be benefits to the participants, the data returned is just too coarse for that and akin to doing a lot of screening without symptoms, a practice that the medical profession has warned against repeatedly.
To this point, yes, you're probably right, but these things are rarely black and white. It's a false dichotomy. They can be harvesting all my data but STILL offer a useful service at a good value to me. And -- more importantly -- nobody else stepped up to offer the same thing with a better business model. Whether it's 23andme or YouTube, it's not necessarily the case that all their customers have their blindfolds on. Some of us are just OK with the tradeoffs and buy into it willingly. The medical profession isn't always able to meet consumer desires, to say the least. And even if 23andme didn't do it perfectly... at least they did it. If the medical profession or the government wants to offer something similar, I'd still be interested... they just haven't yet, AFAIK.
> My dream was that one day they would be able to identify genetic markers not just for health and lifestyle stuff but also behavioral data, like my YouTube preferences and Gmail conservational styles
You know that's unlikely to happen. What's more likely is you helping that in the future people similar to you will be paying more stuff because of their genes or being profiled against because of their genes. Yes, there are laws against just as they are against discrimination on the basis of protected classes but the discrimination is still happening. And with DNA info, you can do it better and will be harder to detect. At the end of the day, other things being equal, any of those companies using dna to assess candidates will be more accurate than those than don't and should effectively dominate the market in a red queen race. Surely, it won't happen now (dna sequencing is way too expensive now) but when it happens, it will be hard to stop.
I think this is inevitable too, but... maybe politically incorrectly... maybe we should acknowledge it and roll with it, and help people with worse genes however we can, but encourage genetic modification for future generations?
I don't think this idea of "gene blindness" can really work, long term. We're lying ourselves when we say all people are created equal. They very much are not. That's the whole point of genetics.
But we can still say "but they still deserve respect, compassion, and equal treatment." That applies whether theu are disadvantaged due to race (itself genetic, though more plainly obvious), hormonal (sex and some birth defects), upbringing, culture, whatever.
I'm totally for opening up the genome for cross-examination and all the hard social questions that will necessarily come wit it, rather than avoiding the topic and pretending like it's not a thing.
Social norms will just change over time. Better understanding and usage of our genes can actually advance the species (and hopefully societies with it).
Even I agree with this, despite not having kids. Their lives aren't mine to monetize or publicize. Let them have whatever semblance of a childhood they can have under the already too harsh spotlight of modern media, yeesh.
It was bad enough in the 2000s when my mom liked all my Facebook posts. Real travesty here.
> It's not doing me or anyone any good just sitting in my body.
That's funny dude!
Not laughing _at_ you, but you just nailed self-objectification and
reification better than a whole chapter of social scince jibberjabber
or pschology babble.
Makes sense! I'm also a "yeah they can poke and prod my body and harvest my organs, not like I have any use for them after I'm dead" kinda donor.
At least it's consistently materialist, eh? (as opposed to spiritual dualism, etc.)
This is probably not a controversial stance here on HN, but IMO humans are essentially wet, mostly hairless sacks of proteins and dreams. It's kinda cool that despite that, we are motile and can pass for sentient (some days of the week).
I'm not demanding anyone else give theirs. I'm just happy to give mine.
Different customers of the same company can respond differently to their actions. In this case my opinion is that this a net good. Others can and will disagree, of course!
I wish the data would be combined with things like Vanderbilt’s BioVU databanks, etc, for actual translational research and not for swift for profit research.
This is just another version of “socialized research privatized profit.”
> GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial
I don't like that you seem to be trying to drive a wedge between revenue streams and ethical goods. Measuring how much money societies spend on things is the best measure we have of how much societies value those things.
Companies (and people, including employees and customers of companies) do all sorts of horrible, unethical things. But profit (surplus) is a good thing overall, as is symmetric information and competition.
