A primer on selling or renting your DNA
Scientists collecting data to help combat disease willing to pay
SAN DIEGO — Feel like earning a little extra money and maybe improving your health at the same time?
Consumers soon will be able to sell or rent their DNA to scientists who are trying to fight diseases as different as dementia, lupus and leukemia.
Bio-brokers want to collect everything from someone’s 23andMe and Ancestry.com gene data to fully sequenced genomes.
The data would be sold or rented to biomedical institutes, universities and pharmaceutical companies, generating money for consumers who share their genetic secrets.
The roundup is mostly led by LunaDNA and Nebula Genomics, startups still figuring out how much a person would be paid for their contribution.
It’s part of the booming bioeconomy, where so-called “sequencing subsidies” are starting to emerge.
A subsidiary of Ancestry.com reportedly sold about 1.5 million saliva test kits last year between Black Friday and Cyber Monday.
“That’s like 2,000 gallons of saliva — enough to fill a modest above-ground swimming pool with the genetic history of every person in the city of Philadelphia,” Wired.com said.
Nebula Genomics wants people to contribute their entire genome and is prepared to help consumers get sequenced at reduced costs.
The consumer could then sell or rent the data on Nebula’s data exchange. Consumers would be paid in some form of cryptocurrency that could be converted to dollars.
The cost of sequencing a person’s genome has fallen dramatically over the past 15 years and now stands at about $1,000. The price could drop to $100 within three years.
The medical, financial, legal and ethical implications of such change will be daunting. So the San Diego Union-Tribune decided to answer some common questions with help from scientists at the University of California, San Diego, the Scripps Translational Science Institute in La Jolla, Nebula Genomics and LunaDNA.
Q: What specific kind of data are scientists seeking from consumers?
A: You, me, the next person — we all have the same genes. But there’s variation in those genes. Some variants can make us susceptible to disease. We call those mutations.
Scientists are largely interested in the mutations because they can cause diseases and disorders.
23andMe tests the DNA in your saliva for more than 500,000 variants. Last year, the FDA gave the company permission to screen people for genes associated with 10 diseases and disorders, including Huntington’s disease and late-onset Alzheimer’s disease.
More recently, the agency gave 23andMe permission to screen for three genes associated with cancer.
The company uses this data to estimate a person’s risk for developing the various diseases.
“Tests like Ancestry and 23andMe only look at small areas of the genome, and aren’t considered to be useful tests for medical care by most genetics experts,” said Lisa Madlensky, director of the Family Cancer Genetics Program at UC San Diego.
“However, they can sometimes identify something medically important that needs to be confirmed in a medical genetics laboratory.”
Q: If I take one of these tests, do I own the data that’s generated from my DNA?
A: Generally speaking, yes. But you have to read the fine print. You should make sure that you say no if you don’t want a company like 23andMe selling your data to a pharmaceutical company or some other type of institution.
Nebula Genomics and LunaDNA are trying to build databases that would be of commercial and scientific interest to the biopharma industry. There’s nothing wrong with that. You just need to be aware that they need your permission to sell your data.
Q: Is it likely that a consumer could make a significant amount of money from either of these two companies?
A: That remains to be seen. They’re both startups, so they haven’t finalized how they’re going to do things.
Dawn Barry, the president of LunaDNA, told the Union-Tribune: “Individuals will be rewarded when proceeds are generated through the sale of access to the data.
“Think of it like a co-op where the value comes from the data set as a whole and dividends are paid out to the individuals that contribute their genomic and health information.
“The more data you share, the more shares in the database you own, the greater your percentage of the proceeds.”
Q: Is Nebula Genomics looking for something different from consumers?
A: The test used by 23andMe offers a limited look at a person’s genes. Nebula wants to get a complete look. So they’re asking consumers to undergo so-called whole genome sequencing. As the name implies, this technique maps out a person’s entire genetic makeup. Such data is widely used by biomedical researchers.
Q: Should I be worried about the privacy of my data?
A: Barry said, “An individual’s data contains no personal identifiers and is combined with the broad population to create the scale and scope necessary to drive medical discoveries.”
Keep in mind that hackers have stolen data from everyone from the National Security Agency to local hospitals. Anyone can be hacked.