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

fiercebiotech.com

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

#91

Post by toomuchtodo »

ryanisnan wrote: post #47
breck wrote: post #33

Earlier quoted context omitted.

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…

If I cared about privacy I wouldn’t have had 23andme and the Personal Genome Project do my genotyping. While it may affect me negatively in the future, the net positive (in aggregate with all participants) will exceed that negative value.

I’m dead in the long run regardless, and would rather find every way I can be impactful with the time I have left, even in these small ways.

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

#92

Post by lifeisstillgood »

aaavl2821 wrote: post #77
searine wrote: post #62

Earlier quoted context omitted.

Agreed. People underestimate how excruciating it is to collect large sample-sizes of genetic data. The database 23andMe has is so stupidly valuable because 1. the sequencing is already done (and paid for) and 2. They can follow up with surveys electronically. This kind of voluntary ancestry service will probably be the only way we will ever be able to collect the millions of samples needed for powered WGS GWAS analys…

I agree 23 and me database is valuable but more for the second reason I think the 23 and me data is not sequencing data but genotype data. So it only looks at a certain type of mutation in a limited set of ~500k known mutations. I may be wrong so please correct me if so. So you won't find as many rare mutations in this data, or non-SNP mutations. Also I don't think they have robust clinical data for all subjects, it'…

Some digging by a lay-idiot

>> The Regeneron Genetics Center (RGC) has built one of the world’s most comprehensive genetics databases, pairing the sequenced exomes and de-identified electronic health records of more than 300,000 people so far. https://www.regeneron.com/genetics-center

https://en.m.wikipedia.org/wiki/23andMe - users 5 million

My understanding is that you are saying 23andme's 5 million records are less useful for drug discovery than 300,000 records with

1. more detailed / reliable medical records 2. they do the wrong type of genetic analysis (which i don't fully follow)

Could you expand more? Can they re-use their genetic material if it was all stuck in a fridge and do the "better" sequencing?

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

#93

Post by ars »

mcculley wrote: post #51
howderek wrote: post #48

Earlier quoted context omitted.

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

I was not aware. Thank you for bringing it to my attention.

Also sign up for this: https://allofus.nih.gov/

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

#94

Post by chrisbaglieri »

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 am always fascinated by these concerns. The data available on you today (financial history, social data, search histories) is more complete, concrete and actionable than one's genomics data. I say this as someone who works in this area.

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

#95

Post by what_ever »

Karunamon wrote: post #81
ryanisnan wrote: post #47

Earlier quoted context omitted.

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…

Insurance discrimination is explicitly prohibited by law, and your genetic makeup is about the least private and controllable thing about you since you leave bits of it everywhere you go whether you want to or not.

Insurance discrimination is explicitly prohibited by law, >>TODAY<<

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

#96

Post by ars »

searine wrote: post #62
aaavl2821 wrote: post #52

Earlier quoted context omitted.

Using genetic data to find new drugs strikes me as a very good use of this data. Medical data is essential to the process of finding new drugs and treating patients and is highly regulated. I think you're right to be concerned about sharing of genetic data, but conflating facebook / google data sharing practices with medical data sharing is not appropriate If the concern is that 23and me may bring the google / FB app…

Agreed. People underestimate how excruciating it is to collect large sample-sizes of genetic data. The database 23andMe has is so stupidly valuable because 1. the sequencing is already done (and paid for) and 2. They can follow up with surveys electronically. This kind of voluntary ancestry service will probably be the only way we will ever be able to collect the millions of samples needed for powered WGS GWAS analys…

> People underestimate how excruciating it is to collect large sample-sizes of genetic data.

That's what the goal of https://allofus.nih.gov/ is. To collect data from 1 million people in the US.

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

#97

Post by jryan49 »

I see a lot of people making claims about 23andme that haven't used the product, and I just wanted to inform people that in the contract you sign with them, they only share your data if you opt-in to it. They make this all very clear. You can also have them discard your sample and delete your info if you haven't opt-ed in to the research program.

Now trusting that 23andme is actually abiding by these rules is a different conversation.

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

#98

Post by mattnewton »

mcculley wrote: post #34
mattnewton wrote: post #31

Earlier quoted context omitted.

“The insurance companies will eventually win this from us” is different from it currently being required. I will read your post but I don’t buy the inevitability that they will win over reasonable privacy rights. Insurance only works as a system for society if the risk is spread among many parties, but if the insurance companies know the risk ahead of time it ceases to subsidize the unfortunate, who are left out in t…

I don't think it is just insurance companies who will eventually win. I think everyone will have everybody's DNA. People who have serious disabilities should be supported by taxpayer funded programs, in my opinion.

Then the taxpayer should be capturing all the value the insurance companies provide. If they are only insuring the wealthy and healthy and the government pays for the rest, that’s a rather raw deal for the taxpayer.

Also I hope you never have my DNA. I can’t think of a reason why you should, and for one possible exercise on why you shouldn’t, please watch Gattaca.

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

#99

Post by mattnewton »

madspindel wrote: post #37
mattnewton wrote: post #31

Earlier quoted context omitted.

“The insurance companies will eventually win this from us” is different from it currently being required. I will read your post but I don’t buy the inevitability that they will win over reasonable privacy rights. Insurance only works as a system for society if the risk is spread among many parties, but if the insurance companies know the risk ahead of time it ceases to subsidize the unfortunate, who are left out in t…

Living in Sweden, this sounds like a US Only problem. Maybe the solution is tax-funded health care and let corporations do great things with the technology?

I buy that my concerns are colored by living in the US, but I actually cannot think of anyone other than my doctors who I want to know one base pair of my genetic code if it can ever be attached to my name. What are they possibly going to do with that information to benefit me? Insurance optimizations? Drug marketing? No thanks.

I’d make an exception for science if and only if it’s full deanonymized and controlled by a nonprofit third party entity.

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

#100

Post by bumholio »

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…

> even if they were allowed to price health insurance based on genetic risk factors it wouldn't necessarily allow them to earn higher profits.

Cue adverse selection. They might not be allowed to collect genetic data, but nothing stops patients from doing their own sequencing, and shop for healthcare plans depending on their predispositions, thus drastically affecting healthcare profitability.

This is not a pervasive problem yet because the tests are pretty crappy and very few people bother, but on the long run, I bet your "level playing field" hypothesis will be debated.

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