Crowdsourcing – a new model for medical research?
Taking part in medical research can be a frustrating enterprise for patients. While the phrase “patient engagement” receives liberal usage in genomic circles, this can often be far from the reality.
“What ends up happening is that our community gets bombarded by requests for our data and we find ourselves answering the same questions over and over again for different researchers,” explained patient advocate Andrea Downing, speaking to FLG. “When we answer them, and take part in surveys, these go off into the ether and we don’t know what happens next.”
Now a new startup company called Genos, originally spun out of Complete Genomics, has unveiled a crowdsourcing platform where customers can pay $499 for an exome sequence, and then be connected with researchers who will reimburse them to use their data in medical studies.
“Cultivating a community around genomics research promises to illuminate the genetic underpinnings of the human condition, including finding cures to our most elusive diseases,” said Mark Blumling, co-founder and CEO of Genos.
“It also engages people in their own healthcare like never before. To realize this great potential, we must remove the barriers to accelerating research, and the only way to do that is by putting consent and control over personal genomics data where it belongs—in the hands of individuals.”
In what the company claims is “a first for the personal genomics movement”, Genos will allow individuals to retain control over their data, controlling if, when, and how it is used in both academic and commercial projects. Participants can browse ongoing studies from Genos partner organisations to determine which efforts will receive access to their data.
Genos has already formed partnerships with several research partners and projects, including a Phase I trial for lymphoma with NantBioScience, and a study by the Utah Foundation for Biomedical Research studying genetic variances of common neurlogical and psychiatric disorders.
“It is exciting to be involved with this groundbreaking collaborative work,” said Gholson Lyon, MD, PhD, a principal researcher at the Utah Foundation for Biomedical Research and Cold Spring Harbor Laboratory. “It is extraordinary that Genos will offer us an unbiased way to find mutations in genes dealing with autism and other neurodevelopment conditions, and we look forward to seeing what we are able to discover by using this platform.”
“Genos’ goal is to build the world’s largest community of empowered, consenting, sequenced individuals, which will have a significant impact on the industry,” said George Church, PhD, Professor of Genetics at Harvard Medical School and MIT. “If we want to shorten the time to medical cures, we need to break down the silos between genomic data and research and move ownership to the individual. The best way to do that is to foster the relationship between individuals and the research community, which is precisely what Genos is doing.”