Monday, October 1, 2012

Be afraid of fear, not personal genomics.


It's just the way it is now. This headline. This story.
(click to read/hear)


It follows the recipe. (1) Start with a headline that demonstrates controversy. (2) Present a story about science-related news (which does not require controversy to be news). (3) End it ever-so briefly and vaguely with dissent, doubt, outcry or warning. 


This recipe applied to personal genomics is particularly bad.

If you read or hear that story you might be primed before you start to wonder, okay what's the worry? Glad this article will tell me, finally, what we should be concerned about concerning this brave new world of personal genomics.

But you'll be sorry when you reach the end and this is all you get:
But the idea of widespread sequencing is setting off alarm bells. How accurate are the results? How good are doctors at interpreting the results, which are often complicated and fuzzy? How well can they explain the subtleties to patients? The fear is that a lot of people could end up getting totally freaked out for no reason. And there are concerns about privacy. Scientists recently even sequenced a fetus in the womb, raising the possibility of everyone getting sequenced before or at birth — a prospect with a whole new set of questions and concerns. "I think there are lots of populationwide and individual dangers," said Mark Rothstein, a bioethicist at the University of Louisville. "We're basically not ready for a society in which very exquisite, detailed genomic information about every individual, potentially, is out there."
Why? Tell us? And I don't mean the "us" who have access to the academic journals. Or the "us" who have the patience to bushwhack through the jargon. I mean, here is your chance to share with the public who you're concerned about: Since you brought it up, tell us why we should worry.

It's unclear who deserves the complaints and the criticism for producing pieces like this, since much of the "telling us" that I'm begging for might be lying on the cutting room floor.

I'm clenched about this because right now about 20 students in my Human Varition (Anthropology 350) course at the University of Rhode Island are voluntarily participating in genotyping through 23andMe. And I'm using this curriculum for the second semester now. After last spring, where over 100 students in both Human Variation and also the introductory level Human Origins (Anthropology 201) did 23andMe, not one student got "totally freaked out." This along with much of my experience with genotyping and undergraduates indicates that, with education and with understanding, personal genomics does not induce fear. Not coincidentally, participating in personal genomics aides in education.

And the same fear that I'm trying to mitigate through education is the same fear that some journalists and ethicists seem to be perpetuating if not creating.

In my experience, if you're informed, you're likely to appreciate biological complexity rather than cling to genetic determinism. If you're informed, you understand the positive and negative consequences and aspects of personal genomics. If you're informed, you don't get lured into personal genomics for all the wrong reasons. You don't order an expensive 23andMe spit kit as if it's snake oil. You don't send your vial of saliva to California, along with 300 of your precious bucks, because you think it will help you to live a longer, healthier life, or because you think it will show you your future.  Spit kits are not crystal balls, are not medicine, are not cures. Plus, the results will also most certainly change! Not your genotypes, but how they're interpreted. That genomes must even be "interpreted" should be a flag shouldn't it?

Informed citizens and consumers don't buy into personal genomics thinking it's their one and only answer-- their key to "me"-- because "me" will be increasingly different the more we learn about genetics and the links between genotypes and phenotypes. "Me" is, for most, too stubborn and conservative, while at once too big and too free, to be dictated by genotypes and probabilistic phenotypes.



All that is guaranteed with a 23andMe spit kit is that you will see parts of yourself that you haven't seen before. There's not a whole lot on the planet that's cooler than that. For most of us who will never go to Mars, at least we've got this, at least we've got innerspace.

Even if you don't get an ounce of joy from the experience, when you're informed you don't fall uncritically for claims that spit kits are dangerous or venomous.

Considering the engaging educational opportunites provided by personal genomics, considering its power to inform, spit kits may just be much-needed anti-venom.

In my experience education diminishes fear about genetic determinism because it diminishes genetic determinism. That leads me to see fear of personal genomics as a symptom of ignorance. And that's something worth being afraid of.

**

Note: Ken, Anne and I have differing views on direct-to-consumer (DTC) personal genomics like 23andMe so please remember that I speak only for myself when I write. Also, I am not paid  or sponsored by 23andMe to endorse their product. I use their product, at the educational rate, to teach anthropology at the University of Rhode Island.

10 comments:

Holly Dunsworth said...

For this piece in particular. There is more about the movie Gattaca (that many people haven't seen but which is FICTION) than there is about real concerns.

How can we NOT suspect that some media, even NPR, are/is more invested in keeping us entertained (and making sure we continue to throw money at that entertainment by keeping our imaginations running wild, uncritically) than actually informing us?

Holly Dunsworth said...

A study of the myths of cancer risk speaks exactly to today's post!

"Overall, 90 percent people, including healthcare professionals, believed genetics ''strongly'' increases risk. More than one in four of the public believed that more than 50 percent of cancers are genetic. Incredibly 15 percent of people we surveyed believed lifetime risk of cancer is non-modifiable," Dr Power said."

Holly Dunsworth said...

OK. This one, today, this story is MUCH better. Good job NPR.

Will Low-Cost Genome Sequencing Open Pandora's Box?

Holly Dunsworth said...

^ Much better but still strange. What the hell does someone planting your DNA at a crime scene have anything to do with having access to your own genetic data?

Anne Buchanan said...

Reading this as we get ready to go to the airport, I'll just quickly say that we do have different views on this, but not because we disagree on whether genetic information is scary or not. It's primarily the extent to which it's being sold as a technique that can actually usefully and reliably tell us about disease causation or risk that we question. I think there's a lot of misunderstanding about genetics that is going along for the ride. But I do agree with you, Holly; that there's a lot of questionable questioning going on too! Let's hope it will all shake out as the field ages and people learn what can actually be done with it.

Holly Dunsworth said...

23andMe gives you much more than estimates of disease risk. You get carrier status for simpler traits. In my course we predict our genotypes for carrier genotypes as well as traits like PTC tasting, etc based on family history and phenotypes and then VOILA! And the ancestry, although also narrow and estimated, is useful.

Lucas Brouwers said...

Thanks for writing this. Just thought I'd share my perspective, as a journalist who's written about personal genomics several times now.

I do very much want to communicate the complexities of genetic testing without beating the fear drum, and I'm not afraid to explain my reader what an odds ratio is or how a GWAS works, but I do struggle and stumble when I have to include all the different aspects of DTC in a single story. There are too many of them, and I have different thoughts on every single one.

Disease risk prediction? I'm not too impressed. Carriership or drug response? I can see the use. So I have Neanderthal ancestry? Now that's frickin' awesome.

As a journalist, I see different stories and I want to tell them all. Earlier this week it was disease risk prediction, for example.

What are your thoughts on this strategy? I do worry that a critical piece on disease prediction can comes across as too negative of personal genomics as a whole, but I think (hope?) readers can make the distinction.

Holly Dunsworth said...

Maybe what I'm *really* saying is that society isn't ready for the media coverage, regardless of quality, because biology education hasn't kept up with the technology.

Zoltán Matyák said...

Regardless of society's "readiness" media coverage is important, it gets the message out to a large number of people, and that's what researchers need. They need lots of people, they need large numbers, not just the biology students, but average people, laypeople like me. I'm totally ignorant of biology and genetics, but I understand the importance and necessity of the development of this field. For me it's fun, for humanity it's evolution, it's survival, it's the future. But I wouldn't know about it without media coverage.
A 23andMe Customer

Holly Dunsworth said...

No one should be reading this as received wisdom. I wrote this post to call out the media and complain about how DTC is portrayed while also sharing my strong feelings about the educational power of DTC. But the educational power of DTC does not include assigned reading of this post.