Earlier this month, the Sunday Times published an op-ed piece by Camilla Long critiquing the practice and business of direct-to-consumer (DTC) genetic testing (“When DNA means do not ask”). It is Long’s right, of course, to express her opinions, but the article is peppered with factual inaccuracies and exaggerations that demand correction.
For instance, Ms Long claims that “over-the-counter [genetic testing] kits are outlawed” in the UK, when in fact they are freely and legally available from a variety of companies including USA-based 23andMe and Iceland’s deCODEme. DTC genetic tests are outlawed in some jurisdictions (Germany, for example), but most Times readers may lawfully purchase these kits if they so desire.
Similarly, Long’s dire predictions regarding the potential mental harm done to those receiving news of increased genetic disease risk is not supported by the scientific literature. There is no compelling evidence of long-term harm caused by receiving genetic test results, and certainly nothing to justify the claim that the “cost to our collective mental health is incalculable”. In fact, while more research is certainly needed, the evidence to date suggests the opposite. A widely reported study in the New England Journal of Medicine last summer, for instance, found that the disclosure of genetic risk status for a serious disease (Alzheimer’s) “did not result in significant short-term psychological risks”.
Long also misconstrues the nature of the genetic basis for complex diseases: she suggests that receiving a bad genetic report card would mean she was “doomed”, when in fact for most common diseases such information would at worst indicate an increased risk that can often be combated with lifestyle changes, enhanced screening and/or medical intervention.
Even those carrying a genetic predisposition for an untreatable disease (which is, it should be added, an extremely unlikely outcome for purchasers of DTC genetic tests) can have much to gain from receiving this information. Long’s fatalistic depiction of genetic information ignores the numerous patients and scientists who have used a genetic diagnosis – either their own or that of a close friend or family member – to catalyze important scientific research, fundraising and patient empowerment efforts in the search for better therapies and, ultimately, a cure.
While it is regretful that Long herself chooses to remain willfully ignorant of her own genetic information, she is within her rights to do so. However, her attempt to impose that ignorance on her readers – by failing to accurately represent the challenges, as well as the potential, of personal genomics, and by demeaning those who choose to learn what they can from their own genome – is misguided.
Whether Long is prepared for it or not, the age of personal genomics is upon us. That does not mean that every individual will – or should – embrace personal genomics today. However, as technology and scientific understanding improve, genetic information, including genetic risk prediction, will become an increasingly routine part of our lives and our medical care. Sooner or later, growing numbers of us will be faced with the challenge of making sense of genetic probabilities, with implications both for our own health and that of our children.
I hope to find time to write more on this myself soon, as the issue of making sense of one’s genetic information, complicated as it is already, is not going to get simpler as more of it becomes more cheaply and quickly available.