IntroductionEgenis Communications Officer Claire Packman wonders if consumers of genetic tests are always clear what they're getting.
We all know that the only things in life that are certain are death and taxes. But although it may not be certain, it's a fair bet that where there is new technology, there are new chances for profit. Whether that profit will be fairly come by or will be made by exploiting the needy or the gullible is open to debate - a debate which might well create a bit of profit for lawyers.
What is beyond debate is that new technology opens up new commercial opportunities. Take the companies offering athletic performance analysis, highlighted by a feature in The Times newspaper. Send off a swab from inside your child's mouth, sufficient to analyse their DNA, and for a fee the company will suggest to you the type of sport in which your child is most likely to excel, whether it will be ‘power-based’ events, like sprinting, or endurance-based events. This way you and she don't waste time and energy on, say, training for the 100 metres when it is marathon running in which she is more likely to win a gold medal. The fee is quite low - around £100 for a test from one US company, according to the Times report. The companies involved are careful to emphasise that the genetic markers they identify are only one among many factors affecting what sorts of events an individual is likely to be better at. One spokesman also warns parents against pushing their children into competitive sport before they are ready.
But are parents really clear about what they are buying? What does the test actually do and what does it tell the consumer? In its comprehensive article (albeit one marred by a rather misleading headline and introduction) The Times explains that the test will look for a single gene and its variant and summarises the findings of studies which suggest why the gene is relevant to sporting ability. It also points out that the test only tests for one gene, when a multiplicity of genes are likely to be implicated. But how many parents will read, or bother to comprehend what one beauty company likes to call ‘the science part’, in this article or in the information from the companies themselves? Who among us ordinary consumers has the expertise, or indeed the patience, to work out just how significant the results of the test really are at the level of the individual child?
This is just one among many commercial uses of genetic testing, of course. There is already a healthy market in over-the-Internet health MOT testing, sending off a swab of one's own cells to get a DNA analysis of diseases you may or may not be prone to. At the moment the market seems to be strongest among journalists, whose papers and magazines are ready to stump up the cost of around £600 in return for articles with titles like, ‘Would you want to know how you will die?’ In their text these articles are in the main fair and balanced; they include comment from eminent professors, suggesting the tests may not really tell you what you want to know, but from the companies’ point of view it may well be that no publicity is bad publicity. There is no agreed standard for evaluating genetic tests, and many can be marketed without regulatory approval.
Stem cell therapies are in their infancy, yet type the phrase into an Internet search engine and up pop ads for plenty of companies offering stem cell therapies, stem cell treatment and stem cell storage against the time when therapies will be available. On December 4 the Department of Health issued a warning about “international, web-based schemes which purport to offer patients "stem cell treatments", "stem cell therapies" or participation in "stem cell trials". These trials, says the DoH, claim to involve treatments for a variety of diseases, including multiple sclerosis, HIV infection, Parkinson's disease and cerebral palsy. The schemes promise to treat UK patients overseas "for free"” but the DoH warns, “it is clear that there are, in fact, significant hidden costs and risks for potential patients.”
There is a flourishing market, too, in genetic testing which promises to reveal your ancestral origins, while associated businesses are ready to sell trips to your ancestral homeland. Yet as Egenis Senior Research Fellow Dr Christine Hauskeller points out in her paper , “many ancestors may not have left any trace at all in a descendant’s specific genome, because she inherits only one set of chromosomes from both her parents … A person’s genome is a patchwork of ancestral DNA, but many ancestors might not be part of it.”
So who is kidding whom, you might think, yet Dr Hauskeller goes on to point out: “(this) argument regularly brought forward by social scientists and critics of genetic testing … is missing the crucial point of the reasoning behind the searches. The weakness of the linkage, the likely arbitrariness of any identified close connection with a particular ethnic group revealed by the test is recognised in the published self-understandings of the testees and the adverts of those selling the tests.” Not all purveyors of genetic testing are unscrupulous charlatans, and not all purchasers are gullible naifs.
In their book Egenis directors Professors Barry Barnes and John Dupré discuss what they call ‘astrological genetics’: the notion that there is ‘a’ gene ‘for’ virtually every human trait, largely propounded by the media but exacerbated perhaps by scientists keen to get publicity for their work. That notion is, of course, a vast over-simplification, and one which conveniently ignores all other effects, such as environment, on a person’s development. It is in this information or knowledge gap that commercial exploitation of gene testing and gene therapies can operate. As noted above, not all companies are unscrupulous, but some are.
It’s tempting to call for further oversight but what form that might take is at best a moot point – regulation is already costly, burdensome and only intermittently effective, particularly where sales over the Internet are concerned. But since the general public is not well-placed to understand the science behind genetic testing products the onus must be on the government and its regulators, advised by scientists, to ensure that people aren’t being sold a sow’s ear masquerading as a silk purse. Meanwhile customers can help to protect themselves by being mindful of an ancient piece of consumer advice - caveat emptor.