Long’s Op-Ed on Personal Genomics Comes Up Short
In an editorial in the Time’s of London’s Sunday edition – “When DNA means do not ask” – columnist Camilla Long took note of Glenn Close’s decision to sequence her genome. Long’s column begins with gossipy comments appropriate to her usual home turf (which is not science journalism). But she soon gets into territory clearly unfamiliar to her, focusing on what she perceives as the increasing commercialization of personal genomics and the broader failures of genetic information to provide satisfying explanations or cures for complex diseases.
Long’s column is a seriously one-sided and misinformed portrayal of not only personal genomics in the direct-to-consumer (DTC) context but also of the utility of genetic information in any context — clinical, commercial or otherwise. At Genetic Future, Daniel MacArthur’s response (“Willful ignorance is not an effective argument against personal genomics”) is every bit as accurate as it is scathing, and appropriately characterizes Long’s writing as “a true masterpiece of unsupported criticism, and an ode to willful ignorance.”
Willful ignorance. On the one hand, Long’s column is unremarkable. Long marries incorrect facts and a clearly uninformed perspective to reach the conclusion that personal genomics is a monolithic marketplace offering “an expensive, largely pointless service endorsed by a celebrity for misleading reasons: it is the genetic equivalent of space tourism.”
It’s hard to be too surprised when a writer with no apparent background or understanding of the personal genomics industry, or the science that supports it, sees a celebrity genomics story and produces a bad piece of journalism. After all, as I wrote last week in “Why the State of Personal Genomics is Not as Dire as You Think,” that’s one of the impacts we should expect as increasing numbers of celebrities embrace personal genomics, the industry as a whole reaches the mainstream and entirely new groups of individuals come face to face with the complicated ethical, legal, social and scientific issues that surround personal genomics.
What surprises me about Long’s editorial (to say nothing about the distinguished publication that published it), and what I think merits further examination, is the complete lack of understanding with which she approaches what is clearly a new area for her – what MacArthur terms “willful ignorance” – and the degree to which she would inflict this mindset upon her readers, many of whom may be similarly uninformed on the subject of personal genomics.
Ignorance may be bliss, but only for some. The crux of Long’s objection to personal genomics is that it provides at best a way for consumers to waste hard-earned money and at worst the opportunity to be hit with a “Damoclean diagnosis,” the impact of which “is almost impossible to imagine.”
Since I do not know Long, I suppose it is possible that she has fashioned a considered opinion that uncovering her genetic status is a very, very bad idea for her. And if her description of the effects of encountering personal genomics information was an accurate one, I might even be inclined to agree with her “ignorance is bliss” approach. As Long tells it, an individual diagnosed with a genetic predisposition to a serious medical condition (a category which appears to include everything from genealogy and paternity testing to actual diseases, including Alzheimer’s, Parkinson’s, multiple sclerosis and schizophrenia, with varying degrees of identified genetic contributors) has a pair of options: (1) worry more or (2) haul off and “have more fun in the short term… buy that speedboat or get wasted more often” until the novelty wears off (at which point one presumably reverts to worrying more). Curiously, she does not suggest a wild weekend with Robert Pattinson.
Thankfully, Long’s fatalistic attitude toward knowing her genetic status is not shared by all. As a journalist, Long would have been well served to speak with Jim Lupski, John Flatley, Sharon Terry, Jamie Heywood, Hugh Rienhoff or any of the many individuals – scientists and non-scientists – who have taken their own genetic diagnosis, or that of a family member, as a call to arms and strive to use personal genomics to improve the understanding and treatment across a wide range of diseases. Without individuals such as these, as well as the governments, investors and businesses willing to support scientific and technological risk-taking, there would be no scientific advancement other than accidentally.
While I respect Long’s right not to know her genetic status, her complaints in this regard seem almost trivial. After all, nobody is forcing Long to spit into a tube to be sent off to 23andMe or join Glenn Close in the whole-genome sequence club by sending $48,000 off to Illumina.
The most unfortunate part of Long’s editorial is her decision that her own ignorance is not enough. She has decided she needs to inflict it on her readers too. It is one thing to choose ignorance for oneself; it is quite another to evangelize in favor of it and impose it on unsuspecting readers. Many in Long’s audience will not be familiar enough with the issues surrounding personal genomics to critically evaluate her writing.
It is unfortunate that damage of the sort created by careless columnists is easy to inflict and difficult to overcome. We can only hope that policymakers and the public alike will hold themselves to a higher standard than Long in evaluating the promise of personal genomics.
I don’t think Long’s view, on the potential down-side (besides the cost) of personal genome sequencing, is careless or necessarily wrong. That’s because straight genetic information can mislead and, therefore, lead to bad decisions.
In the 1990s much of cancer and other medical research focused on genetics. In oncology, the field I know best, it turns out that pure, straight DNA sequences don’t explain the occurrence of many cancers: some people have tumor-associated mutations but don’t have detectable malignancy; conversely, some cancers have no known genetic defect associated. It seems many disease processes depend on environmental, epigenetic and other phenomena, only a fraction of which we comprehend.
Knowing one’s genetic code can give a false sense of security, or of needless doom. While I think it’s useful to collect genetic information regarding specific diseases so that we can better understand their causes and develop gene-targeted treatments, I see potential harm in collecting full genetic codes from most individuals who are not sick, however willingly they offer their sequences and funds for analysis, without fully addressing the potential consequences of all that data.
Elaine –
You are quite right that it is possible to see “potential harm” in one’s genetic information. I will even grant you that, for some individuals, and apparently for Ms. Long, it can cause “needless doom.” However, to the extent that research has examined the manner in which individuals respond to the receipt of their genetic information – even negative information – suggests that the feeling of “doom” (which is Ms. Long’s term as well) is not shared by most. I’m sure you are quite familiar with Bob Green’s REVEAL study in this regard.
There’s no contesting the fact that “many disease processes depend on environmental, epigenetic and other phenomena.” As I’m sure you know, that fact is, unfortunately, not well understood by many who continue to view genetic data through a more deterministic lens. The solution to that problem is better education and an emphasis on informed personal genomics participation. The alternative that you and Ms. Long seem to favor – keeping genetic information out of the hands of consumers until it can be perfectly understood and, ideally, supply only good news – is unrealistic.
At root, the issue I take with Long’s article is not that she wishes to avoid her own genetic information. That is her prerogative, as well as yours should you choose it. But to suggest that individuals, “however willingly they offer their sequences and funds for analysis,” should be denied the ability to peer into their own genetic data is paternalistic and misguided.
If scientists could better communicate the largely non-deterministic nature of genetics to the public, some of these concerns might be greatly alleviated. It also begs another question – would progress in that effort help or hinder the DTC industry’s marketing and financial issues?
This link is no longer working… Is there one that is still working? – http://timesonline.typepad.com/science/2010/03/choosing-not-to-use-genetic-testing-is-an-option-ignorance-isnt.html