One of the speakers at the Oregon Bioscience Association’s annual conference this past week got me thinking about what I’d want to know about myself — my own DNA — if given the chance.
The talk was delivered by Dr. Jill Hagenkord, chief medical officer for 23andMe, a Silicon Valley company that provides direct-to-consumer genetic testing for a mere $99.
At least it did, until the Food and Drug Administration clamped down 10 months ago over concerns about the consequences of “inaccurate results” from its Personal Genome Service.
Now 23andMe is working with the FDA to “figure out how to do this right,” Hagenkord told conference attendees. She said 750,000 people have done the saliva-based test, and no measurable harm has ever come from it.
At some point, regulations — maybe laws — will be in place governing personalized genetic profiling for healthy people who are curious about their ancestry, ear wax, their taste for salt and sugar and whether they’re at risk of developing diseases.
The sticking point isn’t the knowledge, but what people do with it. That’s where ethical issues come into play, said David Farrell, founder and chief science officer of Portland-based Gamma Therapeutics, which develops products for the cardiovascular industry. Farrell attended the conference at Marylhurst University.
A person may learn they have a gene that puts them at risk of developing Alzheimer’s disease, but it’s not a sure thing.
“What do you do with this information?” Farrell said. “That is shaky territory, ethically. I would love for everyone who gets a genetic test to have an authorized molecular geneticist there to tell them what it means.”
At this point, medical centers such as OHSU use such testing in very specific ways, such as sequencing cancer tumors, as opposed to the wide-ranging profiles 23andMe was providing.
Portland’s MolecularMD offers genomic testing services to cancer drug developers. Providence Health & Services has launched an initiative for whole genome sequencing in cancer patients to spot hard-to-find mutations.
As far as 23andMe’s broad, democratic model, it’s likely here to stay, too.
“You can’t put the genie back in the bottle,” said Jennifer Fox, who has two degrees in genetics and is executive director of the OTRADI Bioscience Incubator. “As it becomes less expensive and more practical, consumers will want to use it and they’ll become more savvy about how to interpret the results.”
After giving this some thought, I’d have to say that, yes, I’d jump at the chance to learn more about my DNA, especially for $99.
Staff Reporter-Portland Business Journal
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