Did you intend to give your DNA to GSK PLC too? The company that bought the DNA data from 23andme is GSK PLC, the tenth largest pharmaceutical company and #294 on the 2022 Fortune Global 500.
In 2012, GSK pleaded guilty to promotion of drugs for unapproved uses, failure to report safety data and kickbacks to physicians in the United States and agreed to pay a US$3 billion (£1.9bn) settlement. It was the largest health-care fraud case to date in the US and the largest settlement by a drug company.
I intended to give it to anyone 23andme would provide it to. I previously provided it to Harvard’s Personal Genome Project, along with my lifetime medical records. More recently, Northwestern Medicine and a similar program in affiliation with the National Institute of Health (“AllOfUs”).
Yes, it is complex. I agree that providing personal data to trustworthy research programs is beneficial to the public. Do you agree that providing detailed health data to untrustworthy corporations can easily become problematic? Because so far, you've made it sound like you don't see a reason for an individual to not provide their data to 23andme.
It is problematic but has no perfect solution, as there is no such thing as perfect security. Create data security and governance requirements contractually. Require the partner carry insurance as well as attest to and provide evidence of their controls and processes. If they fail to protect the data provided, require penalties outlined in the data processing agreement.
Alternatively, 23andme could offer compute to pharma companies that can run against their genetic data lake, with DLP and data security controls between them and the pharma customer. This would minimize leakage potential while still allowing compute against the data.
Thank you! You mirrored my thought process exactly.
Is there an open genome movement where you can just donate your genome into the public domain? I don't really care who has access to it, but it's a hassle to have to manually apply for each project that wants it.
> I intended to give it to anyone 23andme would provide it to.
So basically any big pharma or big insurance corporation because those are the ones that will get it eventually and will use it for their own profile without regards to any negative consequences for you or anyone else.
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.”
> The Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II). Title I amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act (PHSA), and the Internal Revenue Code (IRC), through the Health Insurance Portability and Accountability Act of 1996 (HIPAA), as well as the Social Security Act, to prohibit health insurers from engaging in genetic discrimination. Title II of GINA is implemented by the Equal Employment Opportunity Commission (EEOC) and prevents employers from using genetic information in employment decisions and prevents employers from requesting and requiring genetic information from employees or those applying for jobs.
In 2012, GSK pleaded guilty to promotion of drugs for unapproved uses, failure to report safety data and kickbacks to physicians in the United States and agreed to pay a US$3 billion (£1.9bn) settlement. It was the largest health-care fraud case to date in the US and the largest settlement by a drug company.
https://en.wikipedia.org/wiki/GSK_plc