10 ms·

Is the concern that GSK will resell this, or that 23andme will? I wouldn't be as worried about GSK reselling data to insurance companies. They already have acc

Is the concern that GSK will resell this, or that 23andme will? I wouldn't be as worried about GSK reselling data to insurance companies. They already have access to sensitive health information for many many people and have had access to this data for decades. You literally cannot get a drug approved without collecting sensitive medical info on patients, because you can't tell if the drug works without collecting this data. Many drugs now require some genetic testing to be done to justify a prescription There are many laws protecting against this type of data reselling and it also isn't really in a pharma companies business interest to help insurers. Healthcare companies tend to be very protective of and territorial with their data -- especially with enemies -- and pharma and payers aren't generally on the same side I don't understand why there's an uproar over this but at the same time people are pushing for more medical data sharing among providers / payers etc for "population health". At the very least the absolutely certainty some people are expressing about this data being used maliciously seems unfounded. There is a massive massive difference between how data is handled in tech vs healthcare

krageon 8y ago
You make a lot of bold claims in this post and provide no evidence. I think in this case the claims are far enough out there that some evidence is warranted. For example: "They already have access to sensitive health information for many many people and have had access to this data for decades". In what country is this? Everywhere? You would be wrong about that, unless you mean a specific group of people that gave them this information voluntarily (in which case you made it sound a lot more exceptional than it is). "Many drugs now require some genetic testing to be done to justify a prescription". How many? I've interacted with a lot of people who take (or have taken) prescriptions, and have met precisely zero that needed a genetic test. Of course this doesn't mean you are wrong, but maybe you have omitted critical data required for forming the opinion that you are correct. I already mentioned the number (and perhaps the type of prescription is also important). Also again, where in the world is this? These aren't the only two claims I raised an eyebrow about, but they are a good start.
- aaavl2821 8y ago
  I come from a biotech background, and I felt that a lot of the claims others were making about how it was basically guaranteed that GSK would start selling genetic data to insurers were very bold claims with no evidence. I get that in tech data protection and privacy culture and regulations are very different than in healthcare, and there are legitimate concerns especially with 23andme having healthcare data (given how fast and loose they play by the rules governing healthcare), but the tone of some of the comments seemed so confident in their opinions without providing much evidence. I guess each side believes the burden of proof lies with the other In the spirit of not wanting to seem that way myself: * here is a link to all of the clinical studies currently being conducted by glaxosmithkline: [0]. There are 4,662 studies currently listed. This is across dozens of countries. Click around and look at the data they are collecting (look at the endpoints, inclusion / exclusion criteria, etc). This is all clinical study data, so patients have to volunteer for this, but you also have to opt in to sharing your data for 23andme. I also know of a few companies that collected lab data from patients and sold them to pharma companies so they could target them with ads; patients had to opt in to this and there were privacy protections; I'd imagine there are plenty of other examples like this. Also, thousands of other companies have access to massive amounts of health data, genetic and otherwise: EMR companies, insurance companies, hospitals, etc. Many of these groups share information with each other all the time, including genetic information. How else could a lab share with a hospital a patients sequence data? Why is this GSK / 23andme deal particularly concerning? Is it because 23andme or GSK are viewed as bad actors? * here is a list of FDA approved nucleic acid based tests: [1]. More and more drugs are being approved to treat patients with specific genotypes, see slide 316 [2] [0] https://clinicaltrials.gov/ct2/results?cond=&term=glaxo&cntry=&state=&city=&dist= https://clinicaltrials.gov/ct2/results?cond=&term=glaxo&cntr... [1] https://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/InVitroDiagnostics/ucm330711.htm https://www.fda.gov/MedicalDevices/ProductsandMedicalProcedu... [2] https://iabsverige.se/wp-content/uploads/InternetTrends2017Report.pdf https://iabsverige.se/wp-content/uploads/InternetTrends2017R...

krageon 8y ago

You make a lot of bold claims in this post and provide no evidence. I think in this case the claims are far enough out there that some evidence is warranted. For example: "They already have access to sensitive health information for many many people and have had access to this data for decades". In what country is this? Everywhere? You would be wrong about that, unless you mean a specific group of people that gave them this information voluntarily (in which case you made it sound a lot more exceptional than it is). "Many drugs now require some genetic testing to be done to justify a prescription". How many? I've interacted with a lot of people who take (or have taken) prescriptions, and have met precisely zero that needed a genetic test. Of course this doesn't mean you are wrong, but maybe you have omitted critical data required for forming the opinion that you are correct. I already mentioned the number (and perhaps the type of prescription is also important). Also again, where in the world is this? These aren't the only two claims I raised an eyebrow about, but they are a good start.

aaavl2821 8y ago
I come from a biotech background, and I felt that a lot of the claims others were making about how it was basically guaranteed that GSK would start selling genetic data to insurers were very bold claims with no evidence. I get that in tech data protection and privacy culture and regulations are very different than in healthcare, and there are legitimate concerns especially with 23andme having healthcare data (given how fast and loose they play by the rules governing healthcare), but the tone of some of the comments seemed so confident in their opinions without providing much evidence. I guess each side believes the burden of proof lies with the other In the spirit of not wanting to seem that way myself: * here is a link to all of the clinical studies currently being conducted by glaxosmithkline: [0]. There are 4,662 studies currently listed. This is across dozens of countries. Click around and look at the data they are collecting (look at the endpoints, inclusion / exclusion criteria, etc). This is all clinical study data, so patients have to volunteer for this, but you also have to opt in to sharing your data for 23andme. I also know of a few companies that collected lab data from patients and sold them to pharma companies so they could target them with ads; patients had to opt in to this and there were privacy protections; I'd imagine there are plenty of other examples like this. Also, thousands of other companies have access to massive amounts of health data, genetic and otherwise: EMR companies, insurance companies, hospitals, etc. Many of these groups share information with each other all the time, including genetic information. How else could a lab share with a hospital a patients sequence data? Why is this GSK / 23andme deal particularly concerning? Is it because 23andme or GSK are viewed as bad actors? * here is a list of FDA approved nucleic acid based tests: [1]. More and more drugs are being approved to treat patients with specific genotypes, see slide 316 [2] [0] https://clinicaltrials.gov/ct2/results?cond=&term=glaxo&cntry=&state=&city=&dist= https://clinicaltrials.gov/ct2/results?cond=&term=glaxo&cntr... [1] https://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/InVitroDiagnostics/ucm330711.htm https://www.fda.gov/MedicalDevices/ProductsandMedicalProcedu... [2] https://iabsverige.se/wp-content/uploads/InternetTrends2017Report.pdf https://iabsverige.se/wp-content/uploads/InternetTrends2017R...