It occurs to me that I want to weigh in on this recent news item. California tries to tame wild west of personal DNA testing.
Briefly, the State of California has sent cease-and-desist letters to a whole set of businesses offering direct-to-consumer gene testing. California contends that doctors should be the ones ordering tests, and isn't convinced the companies' standards meet State requirements.
My first reaction, like most people's probably, was "Don't tell me what to do with my genes."
My second reaction was, "Hmmm."
I took a look at the site of 23andMe, one of the companies involved. On their demo page some of the issues are immediately obvious. "See your genes in action" it says. The graphic shows an explanation of a fictional client's Type II diabetes risk. "26%" of the risk is "attributable to genetics" it says in tiny type on the graphic that's not really there to be read.
It's good of them to point out that genetics doesn't have much to do with adult onset diabetes. But . . . 26%? Not 25%? Not 27%? That's quite an impressive level of precision. Rather like those little towns that have a sign on the highway saying, "Whatnotburg, Pop. 5341." We've only begun to scratch the surface of which genes relate to which conditions. It's probably a safe bet that we don't know 90% of them for the diseases we know the most about. We have even less idea how the genes interact.
If you've just paid a company $1000 to assess your genetic risk of heart disease, Alzheimer's, or cancer, you're probably not going to want to hear that it was a fun but pointless exercise. You'll see very precise graphs, color-coded red and green, giving you the company's interpretation of the exact degree of risk contributed by each of the genes they tested. There are no error bars on the demo page. The degree of hand-waving involved in something like that is so huge, the wind generated could power Whatnotburg for a month.
What I'm saying is that many people don't have the background to realize they're being snowed, or to realize that the tests aren't actually useful for much at this stage. Fear of cancer is enough to make anyone fork over $1000, plus another $1000, I'm sure, if the first results happen to indicate that more detailed follow-up test would be a good idea.
However, does that mean California's approach makes sense? I don't know. There's something very counter-productive about telling people they have to get permission to deal with their own bodies.
It might be more useful to outlaw all advertising and sponsorships by testing companies. Maybe they should be required to print the scientific uncertainties in large type. They should certainly be required to meet state standards, and what those are should be spelled out.
But should clients be unable to get their own DNA information because it makes them too easy to fool? What would be good safeguards? What are bad safeguards? Or do we really need safeguards? Does it matter if a fool and his or her money are soon parted?
I haven't figured it out yet. What about you?
Technorati Tags: gene, DNA, testing, California
Briefly, the State of California has sent cease-and-desist letters to a whole set of businesses offering direct-to-consumer gene testing. California contends that doctors should be the ones ordering tests, and isn't convinced the companies' standards meet State requirements.
My first reaction, like most people's probably, was "Don't tell me what to do with my genes."
My second reaction was, "Hmmm."
I took a look at the site of 23andMe, one of the companies involved. On their demo page some of the issues are immediately obvious. "See your genes in action" it says. The graphic shows an explanation of a fictional client's Type II diabetes risk. "26%" of the risk is "attributable to genetics" it says in tiny type on the graphic that's not really there to be read.
It's good of them to point out that genetics doesn't have much to do with adult onset diabetes. But . . . 26%? Not 25%? Not 27%? That's quite an impressive level of precision. Rather like those little towns that have a sign on the highway saying, "Whatnotburg, Pop. 5341." We've only begun to scratch the surface of which genes relate to which conditions. It's probably a safe bet that we don't know 90% of them for the diseases we know the most about. We have even less idea how the genes interact.
If you've just paid a company $1000 to assess your genetic risk of heart disease, Alzheimer's, or cancer, you're probably not going to want to hear that it was a fun but pointless exercise. You'll see very precise graphs, color-coded red and green, giving you the company's interpretation of the exact degree of risk contributed by each of the genes they tested. There are no error bars on the demo page. The degree of hand-waving involved in something like that is so huge, the wind generated could power Whatnotburg for a month.
What I'm saying is that many people don't have the background to realize they're being snowed, or to realize that the tests aren't actually useful for much at this stage. Fear of cancer is enough to make anyone fork over $1000, plus another $1000, I'm sure, if the first results happen to indicate that more detailed follow-up test would be a good idea.
However, does that mean California's approach makes sense? I don't know. There's something very counter-productive about telling people they have to get permission to deal with their own bodies.
It might be more useful to outlaw all advertising and sponsorships by testing companies. Maybe they should be required to print the scientific uncertainties in large type. They should certainly be required to meet state standards, and what those are should be spelled out.
But should clients be unable to get their own DNA information because it makes them too easy to fool? What would be good safeguards? What are bad safeguards? Or do we really need safeguards? Does it matter if a fool and his or her money are soon parted?
I haven't figured it out yet. What about you?
Technorati Tags: gene, DNA, testing, California
