GENEWATCH
 
WHAT YOU KNOW THAT JUST AIN'T SO
By Donna Dickenson
 

"It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so."
- Mark Twain

 

Promoting public understanding of science in general, and genetics in particular, usually proceeds from the assumption that people just need more and better factual information. To some extent this is true, with a great deal of misinformation widely extant about genetics. There is no lack of possible candidates for the Least Scientifically Plausible Gene award, if one existed, including media-promoted genes for becoming a ruthless dictator, getting into debt, and that old favorite, the 'gay' gene.

But what actually gets us into trouble, as Mark Twain rightly remarked, isn't so much what we don't know: it's what we confidently think we know that turns out to be wrong. When the first draft of the entire human genome was sequenced in 2000, an editor at the respected science journal Nature predicted that by the end of the 21st century, "Genomics will allow us to alter entire organisms out of all recognition, to suit our needs and tastes ... We will have extra limbs, if we want them - maybe even wings to fly." It just ain't so yet, and doesn't look likely to be, not even in another 87 years.

The public could be excused for believing that medicine is already being radically transformed by genetics. Francis Collins, former co-director of the Human Genome Project (HGP), has written: "We are on the leading edge of a true revolution in medicine, one that promises to transform the traditional 'one size fits all' approach into a much more powerful strategy that considers each individual as unique and as having special characteristics that should guide an approach to staying healthy." Pharmacogenetics is beginning to have some important impacts, true, but genetic-based cancer medicine is so far not nearly as advanced as Collins' premise of a paradigm shift brought about by personalized testing and therapy.

As the New York Times science writer Nicholas Wade wrote in 2010, "After ten years of effort [since the HGP started operations] geneticists are almost back to square one in knowing where to look for the roots of common disease." For example, a recent study of 101 genetic variants thought to be linked to heart disease actually proved of no value at all in forecasting the disease for a group of 22,000 white US women over a ten-year period. The old-fashioned method, taking a family history, was found to be more informative.

All biotechnology is prey to "hype," of course, but genetic science seems particularly prone to misconceptions about what we know that just ain't so. Genetic exceptionalism - the belief that "genes are us," the source of our deepest identity - is both an illustration and a cause of that phenomenon. Perhaps it's because many people believe that our identity is primarily genetic that they attach so much importance to genetic science, and also want to believe that it has succeeded beyond the actual evidence base.

The gene is a cultural icon, as Dorothy Nelkin and Susan Lindee put it in The DNA Mystique: it's widely seen as the equivalent of the soul. With this weight of belief attached to it, it's not surprising that popular understandings of genetics are particularly resistant to the warning that what gets you into trouble is what you think you know, but which just isn't so. Public optimism about genetics is continually fed new tidbits, as was plain during the recent celebrations of the discovery of the double helix.

Buoyed up by the supposed scientific plausibility of the Selfish Gene hypothesis, genetic determinism still seems acceptable to many people at a time when other forms of determinism, such as racial determinism, are no longer respectable. Not only do we obey our genes, in the genetic determinist view: our genes obey the dictates of evolutionary success. There's not much of our identity left at all, in that case, which doesn't seem all that attractive a proposition. So why is this still a widely popular view? It's internally contradictory of genetic determinists to attempt to persuade us to accept, presumably of our own free will, the claim that there is no such thing as free will.

Actually, in giving public lectures and appearing at science or literary festivals, I have found that people can see that point, although of course it causes productive controversy. They're also quite wary of the opposite of over-the-top optimism and hype about genetics: unduly nightmarish visions of "Frankenstein science." In interviews and focus groups, the British social scientist Jenny Kitzinger found that respondents were very apologetic about introducing any qualms about biotechnology that might be dismissed as "science fiction" of the Jurassic Park variety. In a level-headed way, they wanted to know the answers to the sorts of questions that are the rightful realm of bioethics: whose interests are served by particular discoveries in genetics and biotechnology, who is harmed and how can justice be best promoted?

In my experience, people also have a strong attachment to the idea that the genome is the common property of humanity. When I give public talks on commodification of the body, the issue that arouses the most outrage and disbelief is genetic patenting: the fact that 25 to 40 percent of human genes are now the subject of private patents. These patents are now being contested in the Myriad Genetics case,* in which those opposing monopoly patents have formed an unexpected and promising alliance among patients, medical professionals and religious groups such as the Southern Baptist Convention.

It's possible to counteract what people think they know that's simply not true with a reality check of the facts: for example, that retail genetics tests have very limited value, that transgenerational genetic engineering is so far limited to one macaque in one study with a huge attrition rate, or that breast cancer is actually ten different diseases when analyzed genetically, all requiring different treatments. But it's also important to ask why we want to be so sure that what we know about genetics is true, even if it just ain't so. 

 

Donna Dickenson, MSc, PhD, is Emeritus Professor of Medical Ethics and Humanities at the University of London and Research Associate at the HeLEX Centre, University of Oxford. Her new book is Me Medicine vs. We Medicine: Reclaiming Biotechnology for the Common Good.


* Note: The Supreme Court issued its Myriad decision shortly before publication of this issue. For more on the landmark decision, see this issue's articles by Tania Simoncelli and Karuna Jaggar.


 
 
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