As I left the National Press Club yesterday afternoon, I thought, wow, maybe now’s the time. For only $1,000, I could buy my personal genome. I had just attended a briefing sponsored by the Genetics & Public Policy Center and was lucky enough to have been invited to lunch with the speakers beforehand.
I went into the discussion with basically no knowledge of the issues. I had no idea so many companies were selling personal genomes. Where have I been? Blame it on the kids, the long commute, the fact that I focused only on environmental issues for the past two years. I’m familiar with the technology used to sequence the human genome from my days working as a reporter for the news section of Analytical Chemistry, so it wasn’t completely uncharted territory. I even know what SNPs (single nucleotide polymorphisms, pronounced snips) are.
As I sat there listening to the panelists talk candidly around the lunch table, I just couldn’t believe how fast the world is changing. I’ve always thought of myself as one of the younger ones, but when I hear things like 20 year olds are sharing their personal genomes with each other on social networking sites, I start feeling old. I’ve never even used a social networking site.
The lunch conversation started with a discussion about genealogy. My father was adopted and knows basically nothing about his biological parents. I started to wonder, could I learn something about my grandparents and their ancestors by getting my personal genome? When I asked Hank Greely, bioethics law professor at Stanford University, he said yes, but the information would be limited. Much more information can be gleaned about direct parents, but even paternity tests can be false, he said.
The quality of the genetic testing out there varies. The problem is, there is very little government oversight. Genetic-testing labs that sell personal genomes do not have to be accredited or undergo proficiency testing. There are no standards. Consumers are left to fend for themselves.
Greely is concerned that these companies are not sufficiently warning their customers about the risks of receiving personal genetic information. What if you receive family information you wish you didn’t have? What if you are not related to the people you think you are related to? People should be warned, but they are not, Greely said.
Then there are the privacy issues. Sharing your genome with friends on Facebook? Once it’s out there, there is no going back, folks. No one can guarantee your privacy. What if the genetic-testing lab is sold, merged, or goes belly up? What if the data are subpoenaed?
Right now, the information being provided by these companies is not medically important, Greely said. They give you about 30 disease traits/risk factors, including things like your chances of getting type 2 diabetes or Crohn’s disease compared with the average person. Then there are the more esoteric things. Who cares whether your ear wax is wet or dry?
Bob Green, the only medical doctor on the panel, volunteered to have his genome mapped by various companies. He shared the results at the briefing. He had only a slightly elevated risk of having a heart attack compared with the average person. Even though he appeared to be in excellent shape and is an avid runner, he mentioned that he recently underwent triple bypass surgery. So much for the slightly elevated risk. A member of the audience shared a similar story. He said his profile suggested that he had only an average risk of getting asthma. But I have asthma, he added.
I’ve always wondered whether I have Crohn’s disease. For years I was convinced that I did. After numerous doctor visits and awful tests, the results were always the same. No, you don’t have it. I drove my family crazy with all the different diets I tried. I went lactose free for a while (including during a trip to Amsterdam, the land of the world’s best cheese and creamiest coffee—what a mistake that was). I even tried wheat-free for a while (another stupid idea). Could a genetic test put my mind to rest once and for all? Ten years ago, I would have jumped at the opportunity. Now, though, my symptoms have pretty much gone away, and I no longer think I have that dreaded disease. I thank two pregnancies for that. Now I just attribute those horrible days to hormones and staying at the bar too late.
As I left the briefing, a woman in the elevator was joking about getting her pet’s genome mapped for only $100. Is that full-bred dog really what you think it is? Unfortunately, genetic tests are not yet where they need to be to answer that question.
I proceeded to the train station in awe. I couldn’t believe what I had heard. I ran into a good friend of mine, Lynn, on the train ride home. She was born 10 years before me, but we seem to have parallel lives. We have so many things in common it is scary. I couldn’t help but wonder whether my genome and Lynn’s are similar. I probably will never know.
I’ll never forget HPLC 2000, a chromatography meeting held in Seattle the same week in June that a working draft of the human genome was completed. I was covering the meeting for Analytical Chemistry. On a ferry ride coming back from dinner one night, I asked Milos Novotny, a researcher at Indiana University who specializes in bioanalytical separation techniques, what he thought was important at the HPLC meeting. He turned the question on me and asked, "Well what do you think is important?" I replied, "The genomics and proteomics stuff looks interesting." His response: “Genomics is over.” Well, that didn’t turn out to be the case, but who would have thought only eight years later we’d be talking about personal genomes for $1,000.