A very long piece on the “personal genomics industry.” Lots of quotes from my boss Spencer Wells, since he has been in the game so long.
The piece covers all the bases. I actually think some of the criticisms of direct-to-consumer genetics are on base. I just don’t think they’re insoluble problems, or problems so large that that should discourage the industry from growing. I think part of the problem is that many of the people journalists can talk to who can comment on the industry are based in academia, and academia has a different focus when it comes to comes to genetics than the nascent industry. For rational reasons academics need to be very careful when it comes to ethics. Consumer products I think are somewhat different.
But I do think we need to reflect how far we’ve come in 10 years. Back in the 2000s when I was reading stuff on Y, mtDNA and autosomal studies, I honestly didn’t imagine that I would know my own haplogroups and genome-wide ancestry decomposition. It seemed like science fiction. That all changed rather rapidly over a few years, and I purchased kits in the early years when the price was still high. Today it’s a mass industry, with a sub-$100 price point in many cases.
Yes, there are plenty of cautions and worries we need to consider. But the future is already the present, and the horse has left the stable.
Barn’s where you store grain. Shouldn’t have let the grain-devouring horse get in there in the first place, be very glad it’s left.
I think you meant “stable”.
There are several issues here.
The first is genetic privacy. If you order a kit from 23andMe or one of its competitors, then send in a sample to be analyzed, then your genetic information is effectively public domain information. I don’t care how many forms tthey sing or how many bibles they swear on that they will never share that information with other without your consent, the fact is that genetic information about yourself exists that is beyond your control. There are ways that law enforcement and, eventually, insurance companies can circumvent that privacy to get at your information. This is the biggest issue about these testing companies.
The second biggest issue is the current hype that a lot of disease conditions are “genetic”. They are not and, especially anything caused by aging is not genetic at all. The vast majority of the population will never experience any medical problem that exists independent of the aging process (90-95% of all health care costs are covered by Medicare, thus indicating that the aging process itself is the cause of nearly all medical problems in modern society). Approaches such as SENS to cure aging are based on bioengineering that does things other than genetics. In short, these genetic tests are useless for 95% of the U.S. population.
The third issue surrounding genetic tests to consumers is that of various gate keepers. Gate keepers do not create economic value of their own. Thus, they are purely parasitical and, by this very reason alone, should be eliminated.