GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact • Hacker News Board

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#41

Post by gbrown » Wed, Jul 25, 2018, 6:12 PM UTC

mattnewton wrote: post #26

mcculley wrote: post #23

Earlier quoted context omitted.

I don't understand these concerns. I have published my data from 23andMe ( https://enki.org/2017/10/17/publishing-my-genome/ ) ( https://github.com/mcculley/genes-genes ). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the…

Insurance is the first one that pops into my mind. That kind of data changes their bet on your risks heavily into their favor and can disadvantage you if your genes show anything corroleated with late onset diseases. Depending on how this information is regulated, it could also affect the insurance for your biological children. For more hypothetical societal risks, I’ll cite the movie Gattica where DNA credentialism…

Another worry is that there are already lots of companies willing to sell predictive indices for consumers. I could easily imagine "data laundering" where the genetic information is condensed, along with other social and demographic information, into risk indices which are not obviously labeled as containing genetic data. If an insurance company uses a vended solution like this, it would be harder to trace, and may introduce legal complications.

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#42

Post by robbiemitchell » Wed, Jul 25, 2018, 6:13 PM UTC

stochastic_monk wrote: post #40

azujus wrote: post #8

It’s sad that you can no longer get your genetic health info in Europe from 23andMe, but does this mean GSK will only have access to American info?

I expect the paperwork you sign explicitly gives them unlimited rights to your data.

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#43

Post by breck » Wed, Jul 25, 2018, 6:13 PM UTC

dayvid wrote: post #24

I asked 23andMe if there was any way to delete my genetic data from their site after the Equifax hack news. From their response: "23andMe and our third party genotyping laboratory will retain Genetic Information, date of birth, and sex as required for compliance with applicable legal obligations, including the U.S. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), California Business and Professional…

I believe there are services that will do whole genome seq for you for under $10k(and I assume won’t keep your data). You could then use Promethease for analysis.

I’m unaware of any way you could do self-DNA testing at home unless you wanted to spend $100k+ on equipment, reagents, etc. The Nanopore might be relevant but I haven’t looked into it much.

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#44

Post by c2h5oh » Wed, Jul 25, 2018, 6:14 PM UTC

stanfordkid wrote: post #16

koolba wrote: post #13

Earlier quoted context omitted.

Imagine the possibilities of direct to consumer targeted marketing: “ Based on your genetic profile you’re 27% more likely to develop ________, talk to your doctor about how GSK’s _________ can help ”

Why is that a bad thing? Wouldn't want it popping up while I'm looking for dinner recipes, but it's a hell of a lot more useful than shoe ads. It needs to be deeply regulated -- but most ads indicating health benefits already are .

Off the top of my head:

1. A lot of people come to a doctor with a specific prescription medication in mind based on ads alone and many doctors happily oblige and possibly even receive kickbacks from pharma.

How often is medication prescribed for a problem that could have been left alone? I suspect A LOT, based on how over-prescribed addictive and dangerous opiate painkillers are in USA.

We'll now be corralling those people not just on conditions they have, but also ones there is some research suggesting they are a higher risk to get. Maybe they'll even start taking something preemptively, because they have a 200% higher than average chance of developing a condition that affects 1 in 1M...

2. Once your genetic traits data gets to the adtech it's a matter of time before you'll see online gambling ads targeted based on research like this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638385/ and similar things

3. Negative targeting could also become a thing:

- how about you don't show health insurance ads based on genetic markers that can result in high coverage costs? or limiting your recruitment ads to potential employees that aren't likely to have or develop diabetes?

- just checking for lactose tolerance gene would exclude most of worlds non-white population - would that be OK? that same check could be used for medication ad targeting - wouldn't even have to extended dataset

I'm fairly sure I could get you a hundred examples how it could go terribly wrong if I had a couple hours.

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#45

Post by c2h5oh » Wed, Jul 25, 2018, 6:17 PM UTC

nradov wrote: post #38

mcculley wrote: post #23

Earlier quoted context omitted.

I don't understand these concerns. I have published my data from 23andMe ( https://enki.org/2017/10/17/publishing-my-genome/ ) ( https://github.com/mcculley/genes-genes ). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the…

In the USA the Genetic Information Nondiscrimination Act of 2008 explicitly prohibits discrimination on the basis of genetic information with respect to health insurance and employment. No one in politically powerful positions has seriously advocated for repealing the law. The insurance companies don't even dislike it because it creates a level playing field; since the market is competitive, even if they were allowed…

Would that act cover things like targeting health insurance ads based on genetic traits?

How about displaying recruitment ads to people with lactose tolerance gene, effectively excluding most of worlds non-white population?

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#46

Post by koolba » Wed, Jul 25, 2018, 6:17 PM UTC

snissn wrote: post #21

koolba wrote: post #13

Earlier quoted context omitted.

Imagine the possibilities of direct to consumer targeted marketing: “ Based on your genetic profile you’re 27% more likely to develop ________, talk to your doctor about how GSK’s _________ can help ”

If you neglect the dystopian aspect (which I don't have issue doing) the possibility is amazing as someone who is not immune to health problems and appreciates modern medicine.

Preventative targeted therapies lead to over testing. Even worse there is the perverse incentive of having a for profit company marketing the intersection of their products with person's potential future ailments.

Having the same information available to your doctor (or an AI, ha!) that could parse it objectively would make more sense than a single pharma company. Does anyone really think that GSK is going to suggest you take Viagra (Pfizer) over Cialis (GSK product)?

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#47

Post by ryanisnan » Wed, Jul 25, 2018, 6:20 PM UTC

breck wrote: post #33

mcculley wrote: post #23

Earlier quoted context omitted.

I don't understand these concerns. I have published my data from 23andMe ( https://enki.org/2017/10/17/publishing-my-genome/ ) ( https://github.com/mcculley/genes-genes ). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the…

I’ve also done 23andme and am open about my data. I can think of about 3 negative outcomes (maybe insurance problems that could occur without regulation; family privacy issues if someone wanted to track you or a family member down; annoying advertising), and about 1,000 positive outcomes (contributing data to help cure cancer, predict disease susceptibility, drug response, improve general health and wellness, et cete…

Oh come on, don't straw man the actual issues. Nobody is worried about GSK getting rich, but are worried about actual issues like insurance discrimination, loss of privacy, loss of control, etc.

I think few people would argue against the benefits of genetic testing, but just because it's a great thing doesn't mean that being complacent around adjacent shady business transactions is the right approach.

You can be for it, but also for privacy, protection against insurance discrimination, etc. at the same time.

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#48

Post by howderek » Wed, Jul 25, 2018, 6:21 PM UTC

mcculley wrote: post #23

TrainedMonkey wrote: post #3

Make no mistake about what is happening here. GSK is buying access to all of the genetic data that 23andMe has. This is why I am wary to use any 23andMe type of service. "The partners plan to use 23andMe’s data to jointly discover drug targets." They will claim all kinds of protections of course, but it is only a matter of time until genetic data starts being resold.

I don't understand these concerns. I have published my data from 23andMe ( https://enki.org/2017/10/17/publishing-my-genome/ ) ( https://github.com/mcculley/genes-genes ). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the…

Are you part of the Personal Genome Project? It's a large community of people who share their genetic data for science. http://www.personalgenomes.org/us

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#49

Post by paxy » Wed, Jul 25, 2018, 6:23 PM UTC

breck wrote: post #33

mcculley wrote: post #23

Earlier quoted context omitted.

I don't understand these concerns. I have published my data from 23andMe ( https://enki.org/2017/10/17/publishing-my-genome/ ) ( https://github.com/mcculley/genes-genes ). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the…

I’ve also done 23andme and am open about my data. I can think of about 3 negative outcomes (maybe insurance problems that could occur without regulation; family privacy issues if someone wanted to track you or a family member down; annoying advertising), and about 1,000 positive outcomes (contributing data to help cure cancer, predict disease susceptibility, drug response, improve general health and wellness, et cete…

Plus the negative effects need to be mitigated by legislation (and to a great extent already are) rather than secrecy.

Re: GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact

#50

Post by bertil » Wed, Jul 25, 2018, 6:25 PM UTC

Is anyone able to assess the quality of information security at GSK? I would expect reasonably protective InfoSec from 23&Me because of their close ties to Google, but GSK feels like a company too large to care, and without enough hackers at the top to be worried.

I was taken aback by 23&Me’s anti-deletion contract, but with good security, I only have them to fear. If someone less scrupulous can access it, then I depend on their own security and that cascade tends to end up on haveibeenpwned.