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Wednesday, 25 September 2019

Is there a Right not to be Conceived?




I don’t read much popular science, but recently in my local bookshop I picked up Adam Rutherford’s A Brief History of Everyone Who Ever Lived (2016) which is a very readable introduction to modern genetics and its historical background. At one point he illustrates the hazards of inbreeding by telling the tragic story of Charles the Second of Spain who died in 1700 aged thirty nine, but after a lifetime of painful illness and distressing incapacity. When people marry out of their family then after six generations they will have 62 different ancestors; after eight the number rises to 254. But because of the marriage of cousins to cousins, uncles to nieces, and disregarding the possibility of unsanctioned incest, Charles the Second had just 32 six-generation ancestors and a mere 82 eight-generation ancestors. “This is not desirable”, comments Rutherford at page 190. There is both a general problem about inbreeding and a specific problem that the probability of a recessive congenital disorder being activated dramatically increases.

A few pages later (page 200) Rutherford tells us that in 2005 one United Kingdom ethnic group produced 3.4% of all live births but 30% of all babies with recessive congenital disorders. He then goes on to discuss genetic counselling as a way of reducing such outcomes which in practice arise largely from repeated first cousin marriages, which are allowed in English law. But I was shocked by his figures, which I had never come across before, and felt that genetic counselling sounded like a feeble response. But how to think through the problem in a dispassionate way?

I imagined using something like John Rawls’ veil of ignorance. In his major 1971 book A Theory of Justice, Rawls tries to show what kind of social contract individuals would agree to if they were obliged to decide not knowing important facts about themselves as individuals. So, for example, if behind the veil of ignorance you did not know whether you would turn out to be male or female when the veil is lifted, then it is most unlikely that you would agree to a public decision making method which excluded females – or males, for that matter – from any franchise. You would tend to favour universal suffrage which minimises your risk of being disadvantaged and maximises the opportunity which others, thinking along the same lines, would be willing to grant you.

In the case I am trying to consider, those behind the veil of ignorance have not yet been conceived. Nonetheless, these potential persons can be imagined as listeners to a genetics lecture which informs them, among other things, that their risks of being born severely disabled are greatly multiplied if people with varying degrees of closeness are allowed to conceive children, especially if done repeatedly. They are given figures and the problem of recessive genes explained. They are told that the risk of being born disabled is greatly reduced when the law forbids conception between closely related individuals, especially when this is repeated through generations. Eventually, they have to decide on the level of risk they are willing to accept in formulating one of society’s fundamental laws, the law which sets out with whom you may and may not conceive children.

This kind of question has been posed in other ways for other life and death issues. In his 1785 major work on majority voting, the title now usually translated as Essay on the Application of Mathematics to the Theory of Decision-Making, Condorcet pointed out that when the death penalty is provided as a possible punishment in any society, there is always the possibility that an innocent person will be executed – and that is irreversible. So he asks us to consider the question: What probability would you accept for an outcome in which you yourself might be executed though innocent?

From the point of view of the unconceived, the choice seems fairly straightforward whether you think along Rawlsian or Condorcetian lines. Though you stand to lose something from outlawing a host of close relative reproductive relationships – you will never get to be Philip the Second of Spain - this potential loss of benefit is minimal compared to the risk of being born to a life of pain and discomfort which may be very short and may, unfortunately, be quite long. You will listen to the geneticists and you will outlaw reproductive relationships which carry a high risk of causing you serious harm if you are born within them.

This calculus done from the standpoint of the as yet unconceived is quite different from that deployed by those entering genetic counselling. They are being asked the question, Do you want to risk having a seriously disabled child? not the question Do you want to risk being one? Those counselled are real, existing people. They may be under family pressure to start a family together. They may be in love. They may be gamblers. They may not believe in science. They are unlikely to be thinking of the fact that their choices may well yield very large health care bills, to be paid for out of other people’s taxes. Overall, they are not well placed to answer the question in terms of the best interests of an as yet unconceived child.

In other words, though adults normally think otherwise, their situation in real life is not always one where they can be assumed to be good judges for children, still less for children who have not yet been conceived. Both veil of ignorance reasoning and Condorcetian probabilistic reasoning suggest that our laws about who you can and can’t have children with are lax, and that the fall-back of genetic counselling unreasonably favours the interests of the living over those of the unconceived.

Trevor Pateman  explores other gaps and failures in our moral thinking in essays included in his The Best I Can Do (2016) and Silence Is So Accurate (2017)