Things have come on a long way since James Watson and Francis Crick first unravelled the structure of DNA in 1953. The last few decades have seen enormous advances in our understanding of genetics and with it, the advent of genetic testing.
Our genes are the biological information we inherit from our parents, carried in all our cells in the form of DNA. Mutations, or changes, in our genes can increase or decrease our risk of developing a variety of diseases. Genetic tests enable people to find out whether they carry these mutations in their genes, and with it, the risk of disease.
Genetic testing means we can identify newborn babies who have serious, inherited conditions such as phenylketonuria (PKU), cystic fibrosis and sickle cell anaemia within a week of birth – allowing prompt treatment and minimising serious complications.
It means that the man who discovers he has the gene mutation signifying Huntington’s disease can make informed choices about his future, while the woman who knows she has a genetic mutation bestowing high breast cancer risk might seek earlier and more advanced surveillance than she would otherwise have done.
The Human Genome Project
We have come so far in our knowledge of genetics that scientists today have access to the complete DNA sequence for the entire human genome (the whole set of DNA that every one of us possesses), thanks to the Human Genome Project. The project, completed in 2003, brought about a revolution in the science of genetics, with the result that more than 1,800 possible disease genes have now been identified, and more than 1000 genetic tests are available for human conditions.
Despite all this success, it’s still a challenge to determine how the many complex parts of the genome work together in human health and disease. While early genetic tests looked at specific mutations in single genes, research has now turned to the association between several groups of weak genes and how these interact together and with lifestyle factors.
Medical insurance premiums are calculated by predicting your risk of claiming. That’s why your premium may vary depending on what your health is like. With more genes now being identified as potentially having a role in the development of some common diseases, surely medical insurance companies must be chomping at the bit to get their hands on your genetic profile?
It may come as a surprise to find that the answer is actually no. The reasoning behind this is mostly that the genetic predictors are just not accurate enough for us to be able to understand the risk associated with them. The other reason is that it is just not ethical.
It is becoming clearer that many of the conditions diagnosed by the simpler ‘single-gene’ tests become manifest at birth or in early childhood. And so the significance of the genetic tests to insurers becomes less, because the disease has already appeared by the time taking insurance becomes an issue.
There are only a few conditions that develop in adulthood for which single genes have been identified, and for which young adults with a family history of the condition might want predictive testing. This includes hereditary breast cancer – for instance, a faulty BRCA gene can mean a higher risk of breast and ovarian cancer. But medical insurers are not interested in this for the same reason that we’re not interested in your family history. Having a gene, or a positive family history, for a condition doesn’t confer certainty of that condition developing. Despite a 50% to 80% greater chance of developing the disease with a mutated BRCA gene, the controlling factors are mostly environmental, such as your age at first full term pregnancy, whether you breastfeed and whether you’re a smoker.
Furthermore, genetic profiles assign a prediction against a number of variables, one of which is time. There is no genetic test that can identify when the disease will strike. What we do know is that your risk of disease generally increases as you get older, and accordingly premiums rise. But genetic tests are age agnostic, and so even if you do have a faulty gene, your age to risk profile only changes as much the next person’s.
Of course, most medical problems in adults aren’t determined by a single gene, but rather by groups of genes interacting together and with lifestyle factors. Various projects are ongoing around the world to identify the combinations responsible for common diseases. As medical research uncovers increasingly accurate ways to predict disease, will medical insurers change their position on genetic tests?
From a personal perspective, I don’t predict great changes in the foreseeable future. It’s likely to be at least 15 to 20 years before medical science is able to fully interpret these links and come anywhere near to being able to predict what conditions an individual is likely to develop. The clarity, I feel, will be further compounded by the realisation that our genetic determinants are influenced to a much larger extent by environmental factors, including the lifestyles that we choose to pursue.
Furthermore, it’s becoming apparent that genes that may confer risk for one condition may actually be protective for another. It can even be said that those who know about their genetic profile (for instance, know that they are susceptible to cancer or heart problems), may be more likely to make lifestyle changes to prevent them – thereby reducing their risk. The insurance industry would have to develop an unsustainable complexity and intelligence to accurately pick out risk and associated cost, and I think that there could only be a reversion to the more simple risk pooling methods that we rely on currently.
The most important aspect of the issue is the ethical one. Insurance is essentially about the human desire to confer protection to ourselves and those around us. By pooling resources, a community can pull together to look after its members in times of need, and the insurer is tasked with responsibly, and ethically, collecting and dispensing those resources.
And so by looking at genetic risk profiles, the insurer is going against the very ethic of the community, by selecting only the fortunate and prejudicing against the unfortunate. If we, as insurers, take this stance then surely the essence and therefore the business model of insurance is deeply flawed, if not entirely broken?
Increasingly, more insurers are partaking in agreements and codes of conduct which bind us to the correct ethical position for the long-term future.
But what insurers will, quite rightly, look at with increased focus, are the parameters which we can control and which exercise the greatest influence on our health – our lifestyles.
Those of us who choose to pursue healthy lifestyles, or indeed moderate their activity based on the genetic profile they inherit are taking greater responsibility for their health, and so should get financial reward in the form of discount; those who choose to ignore healthy lifestyles carry the risk for the community, and should therefore carry a greater proportion of the financial burden.
So where will the genetics debate go to next? Well, with the almost daily emergence of new technologies and techniques, who knows? It’s certainly not easy to predict.
But given the arguments above, it seems very much to me that when it comes to genetics and insurance, it is not the companies who are in control, but the individuals whose health in their own hands.
Dr Sneh Khemka, MBChB MRCOphth
Medical Director
Bupa International
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