Twenty-five years or so ago, as a family physician in a Christian mission practice in London, I used to help out at a monthly afternoon clinic with the now dated and politically incorrect name: “Handicapped Fellowship.” Patients with various physical and mental disabilities would be transported in by church members to receive health care, and would then enjoy a British afternoon tea, some entertainment, and a spiritual message.
It was there that I met two sisters. Both were in their sixties and one had given up her chances of marriage and independence to look after her younger sister, Elsie (name changed). We would now describe her as having “learning difficulties” or “congenital cognitive impairment” or some such, but in those far off days she would probably at best have been described, by somebody who wanted to put it kindly, as “a bit simple.”
Yet, one afternoon, another member of the Handicapped Fellowship was trying to describe Elsie to me. After struggling to find the right words, she suddenly came out with: “You know, the one who smiles a lot.” It was a seminal moment. There and then, I learned so much. Perhaps Elsie smiled a lot because she didn’t really understand the question or comment, and wanted to disarm criticism. Perhaps she smiled a lot purely by conditioned reflex. But she smiled a lot, and it made Handicapped Fellowship easier for a harassed young physician. She smiled a lot and it briefly made the world a sunnier place. She smiled a lot and in so doing gave us all so much. The woman describing her thus to me had chosen to emphasize the best thing in a very lovely woman. In so doing she taught me a valuable lesson about disability and dignity.
I thought of Elsie again a few weeks ago when I was in Edinburgh, Scotland, at an excellent conference arranged by the Scottish Council for Human Bioethics (1). The conference was titled “To Be or Not to Be?” and explored the ethical implications of embryo selection. One session was a critique of a then current UK public consultation by Britain’s Human Fertilisation & Embryology Authority (HFEA). Entitled “Choices and Boundaries” (2) the consultation was seeking public views about proposals to extend licensing in the UK of pre-implantation genetic diagnosis (PGD) to avoid passing on a predisposition to a specific cancer.
PGD has been licensed in the UK for some years. The technique employs genetic testing on embryos created in the laboratory so that only embryos free from a gene that would cause a serious disease or disability would be made available for implantation into the commissioning woman. Thus any baby born would be free from that particular genetic disease. (It is rarely spelled out—and was not spelled out in the HFEA consultation document—that many human embryos who are found to be affected have therefore inevitably to be discarded to die.)
To date, around 50 genetic conditions have been tested for in embryos under licenses issued by the HFEA. Even so, only around 1000 babies have consequently been born. Testing is very expensive financially for would-be parents, and in terms of discarded embryos is of course very wasteful of early human life.
The HFEA consultation (which closed January 16 with a report expected in spring 2006) was to explore public attitudes to extending the legality of PGD testing to lower penetrance susceptibility conditions. Here, possessing the gene in question results in a predisposition to an inherited cancer, but not a guarantee that anyone possessing that gene will get that cancer. Examples include inherited forms of ovarian and breast cancer susceptibility and a particular type of inherited bowel cancer susceptibility.
So, it is proposed that there be intervention, fatal for many, regarding conditions which even if they developed, could be detected in adult life by screening, could be detected early because individuals and their physicians would be aware of the increased possibility, and could then be treated by the early application of current therapies or those likely to be developed as the years unfold. There is thus a big bioethical decision for the HFEA to make soon on behalf of the British public. And given the respect shown, rightly or wrongly, around the world to Britain’s HFEA as a model, their decision is likely to have considerable impact globally.
But if that’s the bioethics, what might all this mean for global understandings of human dignity? That’s what brought to mind Elsie, “the one who smiles a lot”. In that part of the HFEA consultation document which addressed factors “to be considered when deciding the appropriateness of PGD” the bullet points included, chillingly, “the extent of any intellectual impairment.” Elsie, you wouldn’t have made it.
This is surely eugenics at its most blatant, and a British government body is brazenly proposing this in public. For a condition that possibly might develop, which if it did could be detected early, which if it did could be treated by current therapies or those to come, whose management we might have expected to depend on the fully informed views of the young or older adult considering their future, it is proposed we make sure they never have a chance of being born. And should that condition, horror of horrors, include a degree of intellectual impairment, that would be an even greater reason for the fatal intervention.
Elsie, you smiled a lot. You had dignity. So did your sister. So did the one who found those lovely words to describe you. Is such dignity to disappear for ever in a brave new eugenic world of PGD?
1. A conference report may be available from the Scottish Council on Human Bioethics, 15 Morningside Road, Edinburgh EH10 4DP, Scotland. Tel. 01144 131 447 6394.
2. Choices and Boundaries. Should people be able to select embryos free from an inherited susceptibility to cancer? Human Fertilisation and Embryology Authority, 21 Bloomsbury Street, London WC1B 3HF, England. Tel. 01144 207 291 8200.
