Users of 23andMe receive a testing kit before agreeing to share their DNA for research purposes. When registering the kit online, 23andMe provides a separate consent form and explains to users that it won't share personal DNA information without "explicit consent."
A majority of users do consent to share their DNA information for research purposes, as high as 85 percent.
In effect, individuals are paying 23andMe to test their DNA and more often than not giving 23andMe the right to then monetize that DNA in research efforts, sometimes in partnerships with pharmaceutical companies.
23andMe has partnerships with major drug companies like Pfizer. Like the company it was spawned from — Alphabet's Google, which is an investor — it plans to develop a major source of revenue by helping to develop blockbuster drugs. But the underlying DNA for the research is freely given away by individuals, like Google monetizing your search activity. The co-founder and CEO of 23andMe, Anne Wojcicki, is the former wife of Google founder Sergey Brin.
"Personal genome sequencing will soon be widely adopted as it enables better diagnosis, disease prevention, and personalized therapies. Furthermore, if genomic data is shared with researchers, the causes of many diseases will be identified and new drugs developed. These opportunities are creating a genomic data market worth billions of dollars," Nebula wrote in its paper.
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Nebula claims its peer-to-peer network, based on the blockchain, will enable data buyers to acquire genomic data directly from data owners without middlemen. This will enable data owners to receive sequencing subsidies from data buyers and profit from sharing their data.The model will also deal with privacy concerns by allowing data owners to privately store their genomic data and control access to it. Data owners will remain anonymous, while data buyers will be required to be fully transparent about their identity.
"People pay to sequence or genotype their genomes and receive analysis results. Personal genomics companies keep the genomic data and sell it to pharma and biotech companies that use the data for research and development," Nebula wrote, a model that address "none of the challenges" that are keeping genome sequencing from being more broadly embraced by the public.