HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Monday, July 28, 2008

What Can Genetic Tests Tell You?

Time magazine interviews Linda Avey, co-founder of a genetic-testing company, about some of the misconceptions with the industry and how helpful genetic testing can be for a person. writes,

Linda_aveyIf you'd like to know your lifetime risk of Type 2 diabetes or whence your forebears came, there's probably a Web-based genetic-testing company out there that can tell you. Most of them require just a visit to the website, a credit-card number and your spit sample sent in the mail. But the question is, How helpful is the information you receive? How accurate? The science behind these tests is still so new that some health regulators and medical professionals are questioning their validity and their practical utility.'s Sarah N. Lynch recently sat down with Linda Avey, co-founder of one of the industry's leaders, 23andMe, based in Mountain View, Calif.

What is the biggest general misconception about your industry right now?

Avey: I think one thing is that people are worried this information could be harmful, and we're really not convinced of that. Like with all new things that come out, we don't always know exactly what the implications are going to be. When the car first came out, for example, it didn't have air bags or seat belts or headrests and all the protections that were built into cars ultimately to make them safer to drive.

What is the biggest misconception among your customers?

Before they sign up, some people make the comment, "Am I going to find out when I'm going to die?" And it's not that black-and-white. There are so many things that go into your overall health and well-being — your environment is a huge part of that. People think [the test results] are going to have more of an impact than they actually do.

So the test, if I get one, won't change my life. How valid are the results?

I think it's really early in the game, and the great thing is that the value of those data is going to grow with time. I think what you learn is a glimpse of what is coming out in the research. A lot of it is looking really great. There are some really solid studies that have been published, so I think you'll start to get an inkling of what your risks might be. It's not 100%, and it might change slightly over time, but you are kind of catching the wave — by getting in now you'll get an early look ... It's really for those people who are the early adopters of a lot of technologies.

If the tests are so new and not fully understood, are they worth the money now? Should consumers wait another five years?

You can ask that of anyone who adopts new technology. It is going to get less expensive with time, and if you are not ready to do it now, then it's best that you wait. Not everybody bought an iPhone when it first came out. If you wait, the prices on the technology do drop.

Have you done your own test?

Oh, yeah. My family and I have all done it. Me, personally, I come from really hearty stock, and we're all a very healthy family. We're really, really lucky that we are so healthy, so for me, it didn't reveal things I didn't already know ... My grandmother is still alive, and she's 99 years old.

There's not much federal oversight right now on the genetic-testing industry. Do you believe there should be?

I do think that it would be good. The good thing is that the FTC — the Federal Trade Commission — has the ability to come down on the companies who are making false claims. I think that is a really good means of watching over what is going on in this phase. Because I think the big problem is that if people are making false claims about what your genetics mean for you and maybe trying to sell you a product based on that — the minute that starts getting ahead of the science and what we really truly understand about genetics, that's where I think the FTC can step in.

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