Flashback Friday: The Life & Times of Lilly Mendel

Written November 4th, 2009

Inspiration comes in many forms—the idea to start a blog may well have come from watching ‘Julie & Julia’ WAY too many times on flights to and from Europe this week…almost 24 hours of plane-time certainly gave me a lot of time to ponder what I might write about. Julie chose cooking—I’ll go for my favorite subject since my sophomore year in college, all things genetic.

The reason for the trip to Geneva was to attend the Human Genome Organization (HUGO) Symposium on Genomics and Ethics, Law and Society (GELS) and deliver my perspective on the personal—or direct-to-consumer—genetics industry. Although I’m no longer employed by 23andMe (a company I co-founded and am still on the board), I could at least offer a perspective on the past three years as this fledgling industry took off. The premise of it is quite simple—if you want access to your genetic data, you can order a kit, spit, and you’re soon on your way to personal discoveries of all sorts.

I still strongly believe in the main reason why my co-founder, Anne Wojcicki, and I started 23andMe in the first place—to take genetics out of the protective realm of the scientific community and make it accessible to the lay public. Sure, it’s still quite early in our understanding of human DNA, especially when it comes to the genetic basis of complex diseases like Alzheimer’s and Parkinson’s. Frankly, this deficit of knowledge is what inspired the research mission of the company (23andWe)—by arming people with their own genetic data and giving them the tools to share information about their own state of being, 23andMe could contribute to genetic correlation studies that hold the promise of revolutionizing, and personalizing, healthcare.

So, back to Geneva. The usual arrows were flying at the HUGO conference…a few, very vocal scientists seem to be quite threatened by this notion of democratizing DNA. They characterize it as “trivializing”, which simply doesn’t make sense. I just don’t agree that providing people with their genetic data, which would be virtually impossible for them to derive on their own, demeans or trivializes it. Rather, I think the research community has taken the notion of “human subject protection” way too far, to the point of unchecked paternalism (for more on this, check out Anne’s post here). And I do think the lay public is capable of understanding that what is currently known about their DNA is mostly a work-in-progress.

At the HUGO dinner (and the ever-curious yet delicious Swiss cuisine!), I sat next to a very cordial Dutch scientist who continued with the refrain that it’s too soon to start exposing people to their genetic data. I turned that comment around on him and asked, “When WILL it be time? When we have a perfect understanding of what it all means?” This mindset smacks of genetic exceptionalism, that somehow genetic information needs to be treated differently than other types of health data. If physicians had waited until the understanding of the role of cholesterol in heart disease was perfectly mapped out, as patients we’d STILL not be getting those test results, because scientists are continuing to learn more and more as these data are further analyzed. Just read through the Wikipedia entry for cholesterol, and you realize it’s not as straight-forward as we’re all led to believe.

What IS straight-forward is possibly finding out you’re a carrier for diseases like cystic fibrosis, sickle-cell anemia or hemochromatosis. These are well-proven genetic facts that some 23andMe customers are finding out, often for the first time. And then there’s the whole ancestry angle…it’s possible you could find unknown cousins through the new (still beta) feature called Relative Finder.

The bottom line is that this is only the beginning of a new information era, and over 30,000 people have already chosen to forge the path that we hope leads to a better understanding of ourselves.

Meanwhile, my new mission dedicated to the study of Alzheimer’s disease is moving ahead, through the Brainstorm Research Foundation. More news to follow soon on that front, too…

Show your support

Clapping shows how much you appreciated Linda’s story.