Privacy concerns after 23andMe shares genetic data with a major drug maker



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Pharmaceutical giant GlaxoSmithKline is investing $ 300 million in DNA testing company 23andMe in an agreement that they believe could trigger the creation of important new drugs, but also raise privacy concerns.

GSK will have exclusive rights for four years to use the 23andMe DNA database to develop new drugs using human genetics. Funding and proceeds will be distributed equally, with the possibility of extending the partnership for a fifth year.

For more than ten years, 23andMe has been selling saliva-based DNA kits to consumers to give them insight into their health. and pedigree data. The company has over 5 million users – 80% of them also checked boxes to consent to participate in medical research.

23andme used some of these data in his three-year drug R & D unit. But business leaders said Wednesday that this new collaboration with GSK will pave the way for new treatments using the extensive genetic information offered by consenting 23andMe customers and combining them with GSK's vast resources for development and growth. manufacture of drugs.

role in the world of drug discovery. Researchers use genetic data to help them understand how diseases begin and what diseases and diseases use pathways to progress.

This kind of information helps drug developers to better target new drugs, increasing the likelihood of their success. According to GSK's announcement, access to 23andMe's huge DNA database will also help them identify the patients most likely to respond to certain treatments, by identifying small genetic differences that may affect treatments.

One of these treatments is already underway

GSK has been working on an experimental drug targeting a gene called LRRK2, which has been shown to increase the risk of developing Parkinson's disease. Since only 1% of Parkinson's cases can be attributed to a mutated LRRK2 gene, this means that GSK needs to test approximately 100 Parkinson's patients to find a single potential candidate for their drug trials

. customers who have the mutation, reports Forbes. In fact, they found 250 Parkinson's patients who agreed to be contacted for GlaxoSmithKline's clinical trials on the drug, which could potentially speed up the drug's development.

While the two companies claim that their partnership will only be the beginning of a new

Peter Pitts, the president of the American Center for Medicine in the public non-profit, confided at Time that he feared that whenever an organization shares personal data with another organization,

Pitts also wonders if 23andMe's clients have the right to be compensated if the # The genetic information that they paid for is then used to produce cost-effective drugs.

"Will they offer discounts? to people who opt in, so their clients do not pay for the privilege of working with a for-profit company in a for-profit research project? Pitts is asked NBC.

23andMe insisted in her announcement Wednesday that her clients still control their own data.

"Participating in the search for 23andMe is always voluntary and requires clients to consent to participate, and for those who consent, their information will be anonymised so that no individual will be identified by GSK. "

The CEO and co-founder of the company, Anne Wojcicki, reiterated this in an article about the case.

" Our priority is our client, and to give each individual the options to participate in the research. As always, customers choose to participate or not in research. Customers may choose to opt in or opt out at any time, "she writes.

Yet 23andMe states on her website that individuals" do not acquire any rights to commercial or research products that may be developed by 23andMe or his collaborators.

Do @ 23andMe customers, who have probably not read the fine print on the use of their data, at least get a cut of the sale of it , or did they pay for the privilege of 23andMe sell their genetic privacy? https://t.co/9zEtmz3tRH

– Yoni Freedhoff, MD (@YoniFreedhoff) July 26, 2018

Making money on our genetic data

I just revoked all permissions / consents for my 23andme results. See you soon

– ⚡️ (@Patrickesque) July 25, 2018

If that surprised you, all this shows that you were not paying attention. How did you think 23andMe was going to make money? This was not with sputum kits at $ 99.

– Jonathan Gitlin (@drgitlin) July 26, 2018

"GlaxoSmithKline Concludes $ 300 Million Agreement with 23andMe for Genetic-Based Drug Research" by @megtirrell https: //t.co/H6eXTSNP9a via @DrMJoyner

What impact will this have on consent to research? Were they thinking of GSK when they ticked the box "OK for research"?

– Timothy Caulfield (@CaulfieldTim) July 26, 2018

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