Читать книгу Bioethics - Группа авторов - Страница 69

It is apparent that cases like these pose a challenge not only to our mechanisms for discussion and decision, but to the kind of ethics that underlie the mainstream of debates.

First, it should be clear that the kind of ethics purveyed by the HFEA [Human Fertilisation and Embryology Authority] is not merely grossly inadequate but positively misleading. It is not only that the HFEA is dominated by a philosophy that allows no critique of science itself, or of the direction of medicine. Nor is it that the ethics employed are abstract and have to conform to the discourse rules of bioethics, which forbid historical analysis of social processes, such as the trend of objectification and the forces driving it. The problem is worse: the HFEA cannot even articulate the basic ethical issues at the centre of public concern.

Surveying the HFEA’s public statements on the Whitaker case we find two arguments: the potential psychological effect for Jamie, and the risk of PGD to the embryo, which can only be justified if there is benefit to that embryo, i.e. being assured of not suffering from a genetic disorder. The latter argument is the basis of the HFEA’s permitting the Hashmi family to undergo embryo selection. Their child Zain suffers from thalassemia, a genetic disease, so they could argue that their primary purpose for PGD was to prevent the new child having thalassemia, and that tissue type selection would add no extra risk to the embryo. The HFEA turned down the Whitakers last year because their son was suffering from a disorder which is not genetic, and there is therefore no case for using PGD to avoid it.

These arguments are pathetically weak and seem almost designed not to stand the test of time and the pressure of public opinion. While it is true that Jamie may be psychologically harmed by the conditions of his coming into being, that harm, of itself (i.e. understood without reference to the objectification inherent in reproductive biomedicine), seems paltry in comparison to the good involved in saving a child. As for the distinction based on whether the child has a genetic or sporadic condition, it is not surprising the public finds it incomprehensible for the HFEA to support publicly the Hashmis one week and turn down the Whitakers the next. The distinction, in a common sense view of the world, is meaningless: to hang the different decisions on it is silly. There is no firm evidence that PGD is harmful and, again, such a risk seems small in comparison to the saving of a life. Either the use of the technique is acceptable in both cases, or in neither.

More importantly, nowhere in the HFEA’s public pronouncements can we find any clear reference to the point, which has been at the centre of the public debate, about the Kantian ethical principle of non‐instrumentalisation/objectification. Now even the rules of liberal ethics cannot be publicly mentioned. How can this be? The answer is that the HFEA is, by virtue of its own institutional nature, not allowed to use the sort of ethical principles that ordinary people use. It can consider medical benefit and risk and, because it is written into the relevant legislation, the welfare of the child. But for the HFEA, which has legal responsibilities, and exists in a controversial and litigious climate, it is impossible to base its decision even on ethical principles as universally accepted as Kant’s, because to do so makes it vulnerable: only benefit, risk and welfare considerations, on a strictly individual case‐by‐case basis, are legally defensible. (The Whitaker/Hashmi distinction, for example, is not based on any real moral difference between the cases; in the Whitaker case the HFEA overruled its own ethics committee, which wanted to be consistent with its decision on the Hashmis. What dictated the HFEA decision in these cases was the need to stay within the letter of the law, which appears to forbid selection of embryos to benefit another individual. Its calculation was correct, and allowed it to defend its decision in the High Court against a pro‐life group’s challenge. In effect they made the right decision for the wrong reasons. This is one more example of sensible policy and decision making being tripped up by accidents of drafting of the 1990 HFE Act: it has been comprehensively overtaken by developments in science and technology and needs amending.)

So the result of the HFEA’s institutional status is that the key ethical decision‐making body in this area is forced to behave as an ethical illiterate, and to operate ethically on the basis of political pragmatism. This will never lead to decisions that are either principled or in the public interest.

What is happening is strikingly reminiscent of the history of genetically modified organisms (GMOs): that experience should be a warning to the government. Throughout the 1990s critics complained that the Advisory Committee on Release to the Environment (ACRE) based judgements about the environmental risk of GMOs on narrow, case‐by‐case analyses of the direct environmental impact of small‐scale experimental trials, without considering wider issues. It did so because of the narrow definition of environmental harm in the 1990 Environmental Protection Act. ACRE was not permitted to consider the impact of GMOs in farming (eg. changes in patterns of pesticide use created by GMO use) which might have large environmental impacts, let alone the wider implications of GMOs. Its members had a narrow range of scientific expertise, with no sociologist, economist or expert in farming and the environment. So it could not address many concerns of environmentalists and other critics, yet it was the main venue of regulatory decisions which, by government dogma, must be ‘science‐based’. These concerns eventually exploded into direct action and public furore. ACRE was completely overhauled, European law was rewritten, and the government was forced to delay while it mounted farm‐scale trials of the impact of GMOs.

The HFEA is in essentially the same position as ACRE in the 1990s. Its legal responsibilities stop it from addressing the public’s real concerns, about the trends of objectification, consumerism and eugenics, and where these technologies, step by step, are taking us. As long as HFEA continues to work this way, the head of steam will continue to build, and who knows how it will be released.

Clearly what is needed is an ethical discourse that can articulate and discuss people’s real, long‐term concerns, and can balance them against the demands of individual cases. Here we see a key distinction from the debate over GMOs, where the pressure for ‘progress’ was driven by the cold and unsympathetic imperatives of science and the market, with no clear benefit to people. With reproductive technology we risk being overwhelmed by a tidal wave of sentiment about sick children, blinding us to where these decisions are leading. In public discussion of the Whitaker case, many parents said they would do anything to save their sick child. God preserve us from people who will do anything! We must not make public policy, with profound long‐term consequences, on the basis of individual families’ desperation, however much we may empathise with them.

Ultimately, an adequate ethical discourse needs to reassess the dominant imperative to eliminate all disease and suffering, and the moral blackmail which is wielded at those who dare to suggest that other concerns might have equal importance. For if we fail to do so, we will find, not so far in the future, that the consequences of abandoning principle after principle will be felt not only in terms of a moral vacuum, but in the profound suffering of real human beings, in ways that we can now only begin to imagine.