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Remember genetic profiling? The science fiction idea that, one day, healthcare will be about looking at our DNA and telling us what diseases we will develop in the future and being treated accordingly? Well, that day might just have arrived. According to a report in January by the government-formed Human Genomics Strategy Group, we are currently on the cusp of a revolution in healthcare. Genomic medicine, defined as diagnosis and treatment based on information about a person’s entire DNA sequence or “genome”, is becoming part of mainstream healthcare, says the report, “leading to transformational developments in our ability to determine disease risk and predisposition, to support more accurate diagnosis and prognosis, and to select and prioritise preventive or therapeutic options”.Not only is the science advancing, but the costs of genetic profiling are plummeting too. Right now you could order a kit online for only $99, spit in a cup, send it off, and in six to eight weeks receive your genome to explore, replete with your percentage risk for particular diseases. Imagine if all your employees did this. And it told them not just about their current and future health, but what foods they should or shouldn’t eat and the effects of certain working conditions. Making reasonable adjustments could become a science. Health and well-being programmes could be individually tailored, not a catch-all. “We will increasingly move towards more precise, personalised applications of healthcare solutions, rather than the generic one-size fits all,” says Chris Jessop, managing director, UK and Europe, for AXA PPP Healthcare’s specialist health services division. “I could see us in a few years’ time looking back and saying: ‘Gosh, five-a-day!’ There are hugely exciting possibilities here. There could even be genetic desktop equipment emerging in the next few years. As a society we should not be too frightened by this – while it can be used for bad, there is so much more good here potentially.” It can, and has, been used for bad – at least according to US authorities. In 2000-2001, fear of litigation around carpal tunnel syndrome was high. At the time, the Burlington Northern Santa Fe Railway Company (BNSF) was testing certain staff for a predisposition to the condition without consent. The authorities caught wind of it and, although no evidence was found that it was screening workers, accused the company of breaching disability discrimination laws. The company denied it had breached the legislation, but in 2002 settled out of court, agreeing to pay $2.2 million in compensation to employees. The US has since drafted a law to tackle such cases.Ten years on, the most intriguing thing about the BNSF case is that it remains the only one of its kind. The UK has never had any such incident, despite having arguably laxer laws around the use of genomics within employment (see panel, below). And there are varying theories about why.Genomics: not an exact scienceIn genomics, there are genetic “enthusiasts” and genetic “sceptics”. Dr Stuart Hogarth most closely resembles the latter. For the past eight years he has worked with organisations such as the European Commission, the Department of Health and the (now defunct) Human Genetics Commission, and believes we are in the throes of “geno-hype”. While genetic profiling is getting better at identifying rare diseases linked to single genes, the common diseases that interest the general population are proving elusive. “When we look at common diseases, such as diabetes and heart disease, etc, these aren’t in general are caused by a single gene,” says Hogarth. “The environment plays a major role – your diet, what you drink, how much you exercise, pollutants... the genes that we have been discovering that are associated with these diseases shift your risk by a small extent only.” Confirmed sceptic Helen Wallace, from pressure group GeneWatch, adds: “The enthusiasts initially claimed there would be one or two genes for each disease so it would be simple to identify the people who were at highest risk. The sceptics have since been proved correct – there are hundreds if not thousands of genetic factors, as well as environmental factors and a good dose of chance.”If anyone can bring clarity to the issue, it must be Dr Peter Mills, assistant director, Nuffield Council on Bioethics, and former leader of the Human Genetics Commission. “At the moment, [genetic] tests aren’t highly predictive,” he says. “One school of thought says that once we get enough data, this is going to revolutionise our understanding of health and will allow us to develop new treatments and strategies to treat disease. And the other school of thought says: ‘Well, this may tell us a bit more about how people come to be sick in certain cases but, frankly, the information is going to be marginal.’ I wouldn’t be prepared to say which way it will go.” So what about those $99 online tests? They’re not very accurate, says Wallace. Indeed, the Sunday Times published an article in 2008 after it had sent the same person’s sample to three of the leading companies. Each came back with very different interpretations, according to the report. One company found a 91 per cent below average risk of developing exfoliation glaucoma, which causes loss of vision; another said that person was 3.6 times more likely to develop it. For age-related macular degeneration, one identified a 20 per cent lower than average risk, another said it was 62 per cent higher. But, in such a fast moving field, surely 2008 is an awfully long time ago? “A lot more science has been done,” concedes Wallace, “but studies have shown that a much larger number of genes are involved in a typical common disease than was expected.” In other words, the science has become more complicated, not less.Applications in the workplaceThis doesn’t mean to say, however, that genomics is dead in the water. Far from it. Some of this new science is already being used. Within the NHS, for example, an anti-HIV drug is known to cause a severe and in some cases fatal reaction in patients. But now that research has identified the genetic marker that causes the reaction, this can be tested for. Such testing has been implemented within the NHS and has effectively eradicated the instances of the reaction. Genomic medicine is already entering the workplace, too. Chris Jessop knows of organisations that are already applying these techniques for individuals. “This is not theory: this is starting to happen in practice,” he says, adding that it is typically senior executives, with substantial private health benefits built into their reward packages, who go to specialised private health providers offering such assessments. “These will include things such as genomic profiling, nutrition absorption levels and cognitive function, which are highly personalised,” he says. “The anecdotal stories I hear say that the precision of the nutritional guidance that comes from it is quite remarkable. This is where it’s moving to.”If this is already happening at director level, it’s not much of a leap to imagine that, as the costs of the tests further decrease and knowledge of genomics increases, it will filter down to the general employee population. As Peter Mills points out: “If you work with certain chemicals and you have a genetic predisposition to respond to them in a worse way than others... then you can avoid working in those kind of environments or you can take greater precautions.” Or there’s the association with sickle cell disease that causes people at high altitude to black out. “Obviously that would be of interest to, say, the air force in recruitment,” he says. “So there are examples of legitimate interest.”The benefits of establishing genetic predispositions may be obvious in these cases, but what about less clear-cut examples? Is a job as a City trader too valuable a position, for instance, to hire someone with a genetic predisposition toward developing heart disease? Is a CEO? “A balance has to be struck at some point about how far the legitimate interests of an employer can extend into the area of free choice for the individual,” says Mills. “But at some point those interests might align – presumably nobody who wants to be a trader wants to knowingly walk into a heart attack.”Bespoke health and well-being programmes seem to offer the most obvious potential for this new technology. “There is an increased interest from organisations in investing in the well-being of employees,” argues Jessop. “And the engagement tools being adopted are getting more and more sophisticated, particularly with some of the online solutions emerging. So given all of those trends, when these new precision tools become more available and more affordable, I would see no reason why they should not be offered as an option within those preventive programmes.” Yet Hogarth argues: “It may be that the genetic component of common disease risk is actually less than we thought, and the environmental factors are more important. In terms of tailoring preventive health strategies to people, our track record is poor – we can already look at someone’s cholesterol level, blood pressure and weight, but we’ve had very little success using those personalised approaches to heart disease.” The nightmare scenario?The potential worth of genetic profiling, in the workplace and beyond, seems at once tantalisingly close and frustratingly elusive. Even the scientists admit it is developing at a greater pace than they can understand. Some senior executives with private healthcare are already accessing personalised preventive programmes, but for that to become the norm, says Ben Willmott, CIPD head of public policy, it has to become established in public health. “Once much more is known about it and the predictive value of the data is shown to be effective, then you are likely to see employers taking a greater interest,” he says. “I think that’s a long way off.”If you’re reading this thinking “Our organisation would never get involved in this sort of thing”, then consider this from Mills: “The real dystopian vision is if you get people sorted into different employment categories on the basis of genotyping – one genetic profile working in finance and another in logistics, for example. And there is the possibility of behavioural genetics – identifying genes, for example, associated with risk-taking behaviour.” If your competitors could test for that, and it gave them the edge – then would you, too?
Genetic profiling: what the law saysGiven the hypothetical example of an employer insisting on taking genetic samples of its employees to determine disease risk, Paul Mander, partner and joint head of employment at solicitors Penningtons LLP, lists the laws that this would currently break: “You would certainly breach the Data Protection Act, and the implied duty of trust and confidence that is present in every contract of employment. If someone was dismissed for failing to provide genetic information on request from their employer, then they would be protected under unfair dismissal legislation. And they may be protected under the Equality Act, although that is untested – the act talks about a protected characteristic, typically one of disability. Whereas if you are being asked for information on your genetic profile, there is not necessarily a disability there.” In summary, he says, despite a plethora of related laws, there’s nothing that specifically tackles genetic profiling within a work context. This was considered by the government for inclusion in the Equality Act, and lobby groups insisted gene-related issues needed addressing, but it was rejected on the basis that there was no evidence there was a problem. Such a complex issue could also have slowed the whole act down. Mander, however, believes that the government’s reasons for not dealing with it at the time are not entirely convincing. He feels that a US-style Gina law (see panel, p29), while a long way off in the UK, may well be needed, should these issues start to come to the fore.
GENETICS AND DISCRIMINATION IN THE USGina – the Genetic Information Nondiscrimination Act – was signed into law in the US on 21 May 2008, prohibiting employers from collecting genetic information from employees and using that information to make employment decisions. Mike Aitken, vice-president for government affairs at SHRM (the US equivalent of the CIPD), was involved in drafting the bill. “The bill was crafted for both employment and healthcare and takes into consideration the crossover between the two,” he says. In America, employment and healthcare are joined at the hip, with employers paying for employees’ health insurance as standard. “A health insurance provider is not allowed under this legislation to share any of this information with the employer,” he says. “But they could say ‘Your mother had *** cancer, you might want to get tested for the gene’ – that’s allowable. Or, if you carry a genetic marker on disease Y and it is known that if you are exposed to a workplace that exposes you to chemical X, that X and Y can manifest a disease, then you would want to know that. “So there is some allowance in the bill for safety and health concerns, but only under the auspices of a plan developed by the Department of Labor. But that, again, was trying to tackle the unknown, because we don’t know where we’ll be in 10 years’ time in terms of potential genetic markers.” The purpose of Gina is to protect employees from the dangers highlighted by the Burlington Northern Santa Fe Railway Company case and to put clear rules around the sharing of genetic information. “Under US law, if the gene actually manifests to a disease then it comes under the Americans with Disabilities Act, which deals with disabilities, or the Family and Medical Leave Act. But if you have a genetic marker, one that may never manifest itself, and the employer knows about it and takes an action based on that – that is now discriminatory,” Aitken says. But there is one aspect of the sharing of genetic information that Gina may not tackle. And that is “the flow of information in the normal context of the workplace. For example, a card goes round the office for Mary, whose mother has just passed away from *** cancer. You are now aware of a genetic marker that Mary is likely to be carrying. Gina clearly prohibits testing in the workplace, but this ‘inadvertent approach’ through an open dialogue has to be tested out in a court room.” Even an act as specific as Gina, Aitken admits, is not clear-cut.