February 28, 2024

Your genes for sale: shouldn’t you get a return?

There are ethical concerns about business practices of genomics companies

Personalised genetic testing has become increasingly popular with companies such as 23andMe offering a variety of tests that analyse a client’s genetic profile. There are, nevertheless, ethical concerns about business practices of several genomics companies.

Many of the genetic tests offered by genomics start-ups offer an assessment of one’s predisposition for age-related diseases such as Alzheimer's or Parkinson’s disease.

There are, however, laboratories across the country that are promising patients detailed information such as how they will respond to exercise, which foods they should eat, and even which types of wine they might prefer.

Dr Eric Topol, a cardiologist and professor of genomics at Scripps Research Institute in California, said there was a great potential value in consumer genomics tests, particularly with services like those developed by Geisinger, Invitae and Sema4 that are backed by strong data. But he cautioned that there was not enough evidence for many of the genetic claims being made about exercise and nutrition. He worries that many people would not be able to distinguish the services that are scientifically rigorous from those that are not.

“There’s this mixture of some that have real solid footing and then some that have zero footing,” Dr Topol told the New York Times.

Controversy has also arisen surrounding the sale of aggregated genetic data by genomics companies to researchers and the pharmaceutical industry. In 2015, for example, Forbes reported that Genentech paid $60 million for the whole genome sequencing data of 3000 customers of 23andMe with Parkinson’s disease.

Speaking with the New Scientist, University of Exeter genetics researcher Tim Frayling questioned whether consumers should receive a “micropayment” in exchange for the use of their genetic data:

“I’d hope to have a robust marketplace that gives you the opportunity to sell your own data,” he says. “If a drug [developed using your genetic information] gets sold, there’s no reason why you shouldn’t receive a micropayment.”

23andMe allow clients to opt-in to having their data used in research, and currently 80% of clients do. 

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