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Responsibility in the genomic era

In this tutorial, you will hear from Dr Carwyn Rhys Hooper on the concept of responsibility for health.
Hello, my name’s Carwyn Rhys Hooper. I’m a senior lecturer in medical ethics and law here at St. George’s University of London, and I’ve long had an interest in responsibility for health, and public health policies, and a certain amount of interest in genomics, too. So, traditionally, people have been regarded as being responsible for behaviours like smoking, and maybe drinking too much alcohol, and that kind of thing. And genetic diseases have always being seen as, if you like, the quintessential example of diseases that people are not responsible for in any way.
So the comparison has always been between, say, smoking, on the one hand, a disease or a behaviour that lots of people regard as, to an extent, something that people are responsible for. And, on the other hand, genetic diseases, which are things which you are definitively not responsible for. But this change in genomic technologies that’s occurring might well move what we might call the responsibility cut. And what I mean by that is that the genetic information that we’re going to get– that we’re already getting– is going to impact on the kinds of things we do and don’t regard people as being partially responsible for.
So, to give one example, we might discover, for example, that some people have a genetic tendency, if you like, to addictive behaviour. Or they might have a genetic tendency to get more out of smoking tobacco so that they might find the experience more pleasurable than others for genetic reasons. Now, that may well be the case. And if we discover these kinds of predispositions– and if more and more people get to know about them– then our understanding of whether or not somebody is responsible for smoking or drinking is going to change.
So you might end up in the situation where we actually think some people are less responsible for their behaviours in part because of what we found out through genomic analysis. It might also, of course, work in the other direction. So there might be situations where we have previously felt that a set of diseases is entirely genetic and something that is way beyond any individual’s control. But you can imagine a scenario where an 18-year-old has their genome and exome sequenced and learns about various predispositions to conditions that have been traditionally associated with lifestyle choices. So just an example, perhaps, you might find an individual who may be predisposed to hypertension, high blood pressure.
Now, if they find that out at the age of 18, it is possible– perhaps– for them to modify their lifestyles because they’re aware now of the particularly high risk of hypertension. So, arguably, potentially, one could hold such an individual more responsible if they didn’t amend their behaviour on the basis of this genetic information. So if I am told that I have a higher risk of, let’s say, cardiovascular disease or hypertension at an early age because of my genetic predispositions, then– arguably– I might have more responsibility to amend my behaviour to try and avoid the future impact.
So another particularly controversial area that I can envisage the revolution in genomics having an impact on responsibility is in relation to the decisions that parents make for their children, or, indeed, prospective parents make around reproductive choices. So, again, if people have more information as adults about their various genetic predispositions and have a better understanding of how those might be inherited by children they may have, then this question of responsibility across generations it’s going to get discussed and raised.
So if two individuals who are in a relationship and want to have children have genomic sequencing and find out the both of them have variances of genes that mean that they are particular predisposed to a variety of different conditions– and there’s an understanding that they might pass some of these genes down to their offspring– then there’s going to be lots of questions being raised here. One, about how they will feel about that, and also about the responsibility they may or may not have to have children. Whether or not there would be an expectation for them to use something like pre-implantation, genetic diagnosis, to try and avoid these kinds of conditions.
Now, this sort of thing already gets discussed and already occurs in relation to conditions like cystic fibrosis and sickle cell anaemia. But what the genomic revolution might do is increase, substantially, the numbers of predispositions to a variety of diseases that we can test for. In a very radical situation one could imagine the state expecting parents who make the decision to have a child who might have that kind of risk to somehow pay a premium in terms of health care for that child in the future. That’s unlikely to occur, but one could imagine that kind of ethical question being raised, at least.
If a mother finds out that the baby that she’s carrying has a number of genetic variants, which means that the child is at a high risk of a whole range of different conditions, does that mean that there’s an expectation for the mother to consider termination of pregnancy? Will the mother feel a greater obligation to do that? So those kinds of very controversial issues are going to get raised. And, again, they are already being raised. It’s just the scale upon which we’re talking is going to be different.

The concept of responsibility for health is highly controversial, but it is ever-present in the modern discourse about public health.

No one can deny that individuals sometimes act in ways that increase their likelihood of developing a disease or an injury.

Smoking on a regular basis increases the risk of developing lung cancer. Skiing on a regular basis increases the risk of breaking a leg.

Of course, there are many social and environmental factors that impact on health and few people are fully causally or morally responsible for their ill-health. However, many conditions are linked to human behaviour and a number of ethicists have argued that this fact has relevance for the fair distribution of healthcare resources.

The genomic revolution may well have a significant impact on the responsibility for health debate. Genome wide sequencing might uncover genetic variants that explain why some people can consume a great deal of alcohol without developing liver cirrhosis.

Genome wide sequencing might also provide information that will enable people who have a greater genetic risk of a certain condition (e.g. type 2 diabetes) to amend their lifestyle in an attempt to reduce the probability of getting the disease.

In other words, the way in which we apportion responsibility is likely to be radically affected by the genomic revolution. Reproductive choices may also be affected by more widespread genetic testing and difficult questions about reproductive responsibility will inevitably follow.

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The Genomics Era: the Future of Genetics in Medicine

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