Blog Post January 17, 2013

Reaching the 'public': Let genomic medicine education begin

A few months ago I wrote about some of the obstacles facing genomic medicine, particularly ethical objections and a general fear of the unknown.*

I figured I’d want to revisit the topic at some point, but I didn’t expect it to be so soon. A recent wave of commentary has brought some of the issues to the fore once again, however. They have me thinking that, at least in the short term, the challenges of improving public knowledge and opinion about genomic medicine probably rank up with those associated with the complex biology and technology, as well as the healthcare delivery systems it must disrupt. It's a challenge that we must overcome.

Prominent freelance writer Virginia Hughes—who also blogs on the wonderful Phenomena site on National Geographic—started things off with an article objecting to the paternalistic tendencies of ethicists in the literally titled It’s Time To Stop Obsessing About the Dangers of Genetic Information, posted on Slate. The first sentence summed things up a bit more bluntly than I had before: “I’m sick of reading about the dangers of the genome.” Not surprisingly, this caught my attention. She goes on to argue that there is growing evidence that people can handle the information contained in their genetic data, even if it’s negative.

Ironically, however, it was Hughes’s subtitle that stuck with me: “People are smarter and more resilient than ethics debates give them credit for.” Hmmm. This assessment flies directly in the face of the contention of Mike the Mad Biologist from my post, based on his experiences in public health, which is, “If there is a way to screw something up, or misuse it, [people] will.”

The next commentaries reflected the two sides of the disagreement. First, writer David Dobbs joined with Hughes in Embrace Your Dangerous Genome, posted in Wired. In it, he bounces back and forth between the worlds of direct-to-consumer genetics, in the form of 23andMe results, and clinical genomics, including a somewhat harrowing discussion of a friend with a high percentage gene variant for breast and ovarian cancer. In essence, however, he echoes Hughes’s contention that when receiving complicated results from DNA testing, “nobody freaked out,” and that such data is useful rather than harmful.

Genetic counselor Laura Hercher from the Joan H. Marks Human Genetics Program at Sarah Lawrence College was among those who objected to Dobbs’ post. Her response, posted by Dobbs in the same space, argues for a kind of "selective paternalism" in returning genetic data to patients in a clinical setting. She argues that Hughes and Dobbs are basing their arguments on what might be considered an elite cohort made up of those who can indeed handle knowledge about their personal genetic data. Her work on the front lines of genetic counseling has given her a view more like that of Mike the Mad Biologist, one that is more jaundiced, more realistic, or both.

The core of her argument is summed up:

So we worry about the effect that getting [genetic] information may have on the people who live where the sky is blue and the sun is yellow. Sue us.

(And by the way, they will sue us too—another difference between the real world and genetics as a social media project.)

Finally, and this is what tipped me over the edge, the BBC posted an article  about the National Health Service (NHS) project to sequence the genomes of 100,000 people with rare diseases and cancer. The article purports to focus on big data and the rich opportunity such a large, coordinated collection of sequence data provides for medical progress, a prospect that I find very exciting indeed. Health data security concerns are highlighted in the article, but I thought in a reasonably balanced way. No, the kicker is provided by the article’s conclusion, provided by (you guessed it) a bioethicist:

Bioethicist Stuart Hogarth of King's College London said he is not sure people are ready: "The 'grand bargain' that the government is offering us is that if we give them our DNA then they are going to revolutionise healthcare. . . .” It's not clear that the government has the capacity to put in place the large-scale IT project of the sort that would be necessary to do this, and it's not clear that the British public is willing to accept that bargain.

Let me get this straight. The view of ethicists and those on the front lines of public health is that the “public” is composed of @#@#$#% morons who think the sun is blue and the sky is yellow, who will screw things up in any way possible, who will sue over inexact probabilities, and who aren’t ready to provide their data for improved healthcare or understand what their personal data means to them. Wow.

We have quite a task on our elitist hands, apparently. Genomic medicine must make sense to a much wider range of people. Its benefits and limitations must be broadcast. Its importance must be emphasized over and over again. And the point must be made at top volume that no, this is not stuff just for geeks and doctors and people who have genetic diseases. It’s for everyone and it’s worth some time away from World of Warcraft (or Kim Kardashian, lolcats, the Super Bowl, Pinterest, whatever) to understand, at least a little bit. For the benefit of you, your children, your neighbor, and society in general. Then, perhaps, what a genetic counselor says will have a positive impact that doesn't inspire litigation.

Maybe the “public” truly can’t handle it, and we can later find a scapegoat (our schools? the Internet? social media?) to blame for failing us. But we have to give it our best try. Let the education begin.

*If you don’t want to read or re-read the entire post, suffice it to say that there was a lot of news swirling about non-invasive prenatal testing at the time, plus a case of discrimination against a non-symptomatic child carrying mutations associated with cystic fibrosis. Coverage in the mainstream media reflected confusion about what genomic medicine actually is, fear based on this confusion, and a lack of understanding about the field’s wider implications. The ethicists were having a field day, and I put out a call for all parties to join forces to start clearing the clouds of confusion.