I learned two important lessons in a statistics course I took in college: 1) don’t play the lottery; 2) be skeptical of statistics, especially nice-looking charts and graphs.
Yes, I did grow up to be a major purveyor of statistics, but I think it’s a good thing that my first instinct is to be skeptical of the power of numbers when someone is telling a story.
That’s why I was disappointed to miss a recent presentation entitled, “Consumer Interest in Health & Genomic Information,” by Steve Bodhaine, a Yankelovich researcher, who appeared at an HHS-sponsored conference . (For more on the event, read Jen McCabe Gorman’s summary of a panel that included Esther Dyson, Matthew Holt, Linda Avey, and Rebecca Fisher).
Happily, I ran into Esther the next day as I walked down Connecticut Avenue to work. She dug into her bag and handed me the Yankelovich slides, which include the finding that consumers are “interested but skeptical” about how genetic testing is used.
Since I missed the presentation, I asked Esther for her review of the findings. Here is what she wrote:
My data, my self
Yes, people are woefully unprepared to understand this kind of data, just as they are unprepared to file taxes, handle a sudden request for a divorce, deal with a non-genetic diagnosis of cancer, respond to an SAT score that indicates a 20-to-1 chance of getting into Harvard and a 3-to-1 chance of getting into the local state university, etc. etc. But we don’t require that people hire professionals – even though mistakes are made. In health care, people are not required to get (nor does the system usually pay for) second opinions, even though they would reduce error and heartbreak. Life just *is* tough, and medical care is riddled with errors and dangers.
The best way for people to understand genomic data is to explore their own – ideally with competent, lucid explanatory information that is somewhat personalized. And ideally, they could easily find experienced genetic counselors to help them interpret the data. But even if they can’t, those who want to explore their own data (and pay for it) should have the opportunity to do so. It’s amazing how people can understand complex batting averages, race-track betting odds or stock-market statistics, according to their interests. I expect the same to happen with genomic information. Just give people who are interested a chance to explore (with credible information and context), and it’s amazing what they will figure out. Over time, people will understand exactly what you can and cannot glean from genetic data – and as more of it becomes available for responsible research, the data itself will become more meaningful. The first adopters are benefactors (well beyond the money they spend); later users will be beneficiaries. See “What You Can Do for 23andMe (and Future Generations)”
As for regulation, it’s absolutely appropriate to regulate labs and to vet sites for misleading information, spurious promises and fraudulent sales pitches. But I’d like to control my own data, please, and make my own decisions about whom to share it with, whether that’s no one, a doctor, a relative…or the whole world.
[Disclosure: I’m on the board of 23andMe, and I’m a research subject for the Personal Genome Project, for which I will publish my full genome and my health records, personally identified, on the Web.]
What is an e-patient to do when faced with questions about genomic data? One answer is to stay tuned to the statisticians who, as Sharon Begley writes in Newsweek, “are the new sheriffs in town.” Another is to read a memoir like the one a friend handed to me last week, “Pretty Is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny,” by Jessica Queller. What are some other possibilities (besides playing the lottery)?