4 ms·
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 gene
by 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...