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A permissive trend - and its limitations

12 May 2008

By Dr John Gillott

Appeared in BioNews 457
Today's 'Show of Support' for the UK HFE Bill, now before the Commons, to put forward the message to MPs that it is 'vitally important that the legislation is not watered down', raised questions and debate about whether scientists are protesting, lobbying or explaining around the issue (1). But what seems uncontroversial is that the support given to the Bill by researchers, medics and patient support groups is the natural corollary of their success in influencing the shape of the proposed legislation over the course of four years of debate. Among other things, the Bill allows new forms of embryo research, it allows the creation of 'saviour siblings' within strict limits and it removes the formal requirement that consideration should be given to the child's need for a father in assessments of a woman's suitability for IVF. In part these provisions confirm some of the more liberal decisions taken by the Human Fertilisation and Embryology Authority (HFEA) in recent years, and in part they break new ground. These are important gains. This is not, however, a straightforward story of liberalisation and progress.

A Tale of Two Chairs

The Bill as it stands substantially reflects the proposals that emerged in the summer of 2007 from the Joint Committee of the Lords and Commons set up to scrutinise the draft Bill, chaired by Phil Willis MP. Concretely and most notably Willis' Committee convinced the Government to support a wide range of hybrid embryo research and also to drop plans to merge the HFEA with the Human Tissue Authority. Less commented upon however is the fact that Willis, who was also chair of the Commons Science and Technology Committee at the time, effectively buried the more radical proposals that had emerged from that Committee when it was chaired by his predecessor, Ian Gibson MP. Its controversial 2005 report, 'Human Reproductive Technologies and the Law', framed the initial discussion of the shape that legislation should take. In that report the Committee set itself the task of considering, among other things, 'the balance between legislation, regulation, and reproductive freedom.' With the explicit or tacit support of some of those campaigning in favour of the Bill today, the Committee gave a fair degree of support to the idea of 'reproductive freedom', and also, in parallel, the freedom to research, when it published its findings. It is these ideas that Willis removed from the agenda and that are absent from the Bill.

In its 2005 report the Science and Technology Committee recommended that most conceivable research applications be allowed in principle, so long as the creations were destroyed by 14 days. Contrary to the approach taken by Government, the Science and Technology Committee proposed a slimmed-down and faster system of regulation, with a greater emphasis on trusting professionals to follow the law. Indeed, in principle the Committee suggested that the law itself might be changed so that research using embryos should be broadly permitted except for specific prohibitions (to be decided), effectively abolishing the system of regulation run by the HFEA. Regarding PGD, broadly speaking the Committee adopted the harm principle - if harm could not be shown to result from a particular application it should be allowed in principle. On this basis the report sanctioned PGD for any medical condition rather than restricting its use to tests for mutations that carry a significant risk of a serious medical condition. It also suggested that social sex selection should be considered as a possibility.

Step by step, the aspects of the 2005 report that challenged the fundamental structure of UK regulation have been dropped. This began with Willis criticising the proposal to allow social sex selection during a Parliamentary debate on the report in July 2006 and finished a year later with ringing public endorsements of the HFEA from the Scrutiny Committee and leading scientists in the cause of defending hybrid embryo research and fighting off the proposed merger of the HTA and the HFEA.

Back to the Future

The pragmatic question from the scientist or campaigner might be, does it matter? At some or indeed many levels it is hard to argue with these practical concerns. However, in addition to points of principle it is worth pointing to the strained arguments the Bill tends to demand from its supporters and some practical problems it poses. Consider PGD and embryo research again.

The framework of the both the current Act and the new Bill encourages its supporters to speak of significant risks, serious conditions and of morally difficult choices in general when discussing PGD. But is this how the public - never mind campaigners - in favour of the technology really views things? Surveys of public opinion absent experience of the issue are one thing, but the notable point is the liberal character of people's views if and when they come to use the service. Indeed, people want to be able to decide, after discussions with professionals, what is and is not appropriate. Theresa Callus, who conducted research on this more concrete expression of public opinion, was somewhat surprised and even unhappy with the results (she believes it shows a lack of understanding of moral rules on the public's part) (2). From a practical point of view, while most prospective parents can make use of PGD to avoid conditions that run in their families, there are some who will be denied (3). In addition, what we might call 'while you're at it testing' is blocked by the Bill. These are requests for additional tests as an add on when a licensed test is already being performed. Patients make such requests today and as technology advances we can expect the number of requests to increase.

The framework of the Bill ought to cause embarrassment if not something stronger to scientists when it comes to human admixed embryos. The Bill imposes restrictions on the use of and requires careful licensing of entities that most scientists view as a simple collection of cells of no moral significance, a collection of cells moreover that could not develop into a life form no matter what environment it was placed in. It is hard to see how public debate on this issue can thrive if that viewpoint is not presented never mind not pressed. The framework of the Bill might also cause practical problems for research. One sign of concern about this is the effort that some scientists have put in to trying to craft a definition of human admixed embryos that will work within the current framework. The fact that researchers were finding it difficult to negotiate their way within an essentially restrictive framework was one of the main reasons the Commons Science and Technology Committee recommended a more liberal regime in their 2005 report.

If the Bill passes through the Commons substantially unchanged, this will be of benefit to researchers and patients. But problems will remain. With a new and by all accounts activist chair of the HFEA in place, we should expect further lively policy and perhaps legal debates in the years to come.


SOURCES & REFERENCES
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2) See Therese Calllus, Patient Perceptions of the Human Fertilisation and Embryology Authority, Medical Law Review, 15, Spring 2007: 62-85.
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