Sunday, May 25, 2008

Living with our genes

Gene testing is becoming more popular and I expect it will become downright trendy now that Bush has signed a bill to prevent discrimination against folks with dodgy genes. When I say dodgy, I mean potentially dodgy of course. Not all genetic portents truly predict an undesirable future. The environment must also play its part. In talking to a friend from the UK last week, the topic came up around gene testing and the dilemma of insurers and employers who may see a risk the the genetic profile of prospective customers or workers but have limited ways to use that information to politely tell a prospect, no. It sounds unethical to deny insurance coverage or employment, but is it?
Our discussions was colored by the healthcare environment my friend and I are from. I live in the US, he in the UK. He has access to socialized medicine. I do not. I rely on reimbursement for all procedures and medicines from my insurance company. He never sees a medical bill. Both our worlds are governed by codes and formularies. In mine, how my doctors visit is categorized governs how much I will have to pay for services.
He put forward a view that if insurance companies take into account all risk factors including genetic ones, then the greater good will be served by providing less coverage for more risky cases. The genetic profile just helps to fill out the picture and the resulting gaps in coverage then provide an opportunity for novel approaches to insurance to entrepreneurs. In other words, the free market prevails. He has an excellent point and he comes from a country that has a basically fair health system, despite all its shortcomings. It is natural for him to think there is a fair way to deal with genetic profiles without having to resort to policies to protect those with ‘bad genes’. For me, living in the US, it seems as though gene testing provides one more level of categorization that will lead to no reimbursement or unaffordable coverage for many. The codes for risky genes have yet to be inserted to a system that leaves millions of Americans uninsured. Anit-discrimination laws do not endorse irresponsible behavior in the light of risky genes but rather give pause to those who seek to capitalize on the information for financial gain. The laws make us think. For genetic variance, our state of understanding is very immature. Genes and environment interact to place us at risk of disease in ways that are unique to each individual. It will be very difficult to say just what health outcome can be expected of a particular gene profile for many years into the future to come. In the meantime, the anti-discrimination laws will hold overzealous insurers and employers at bay. The ‘defective gene’ label is one that we can ill afford until more is understood about what it means. And boxing us into yet another categorization with a damning code to decide how we pay, is just a little before its time.
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