Juliet Tizzard, Progress Educational Trust
14 August 2002
[BioNews, London]
Last week, we reported on the story of the Whitakers, whose request for preimplantation genetic diagnosis (PGD) and tissue typing was refused by the Human Fertilisation and Embryology Authority (HFEA). Now that the discussion about the rights and wrongs of the request has died down a little, a broader debate about how such requests are handled by the HFEA is emerging. Can the HFEA continue to arbitrate on such matters, or is it time to go back to parliament to reconsider the whole issue of PGD?The HFEA's method of regulation, where particular uses of PGD are considered on a case by case basis, has often been regarded as an open and honest way of doing things. But the HFEA itself might now be wondering whether such an approach to regulation is worth it. Considering the merits of individuals cases one at a time (and turning some of them down) almost inevitably leads to a situation a specific family with a heart-rending story, like the Whitakers, is pitched against a rather faceless public body.
This personalisation of the regulatory process is precisely why there has been so much support in the media for the Whitaker's request for treatment. The Whitakers seem like a decent couple who just want to do all they can to save their sick son's life - everyone can identify and sympathise with that.
Mary Kenny, writing in the Daily Telegraph, calls this approach 'ethics by sentimentality', in which decisions about PGD are made on a case by case basis, according to how deserving of treatment the particular people involved are. But this didn't happen in the case of the Whitakers and that's what makes the decision seem so cruel. Mr Whitaker himself, in an interview with the Daily Mail, said of the HFEA: 'They didn't even listen to us. I'd asked to be there so they could ask me any questions - to tell them what Charlie's life was like and to meet us.'
By establishing a system whereby access to PGD is decided on a case by case basis, the HFEA has perhaps puts itself in a no-win situation. Considering the merits of individual requests seems like a fair and reasonable way of deciding. But then to turn down a case like the Whitakers on what many have called a legal technicality looks, to the untrained eye, like downright cruelty.
Perhaps it is time to reconsider PGD - not to restrict access to it, but to give cases where the intention is to save or improve lives the opportunity to go ahead.
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Reproduced from BioNews with permission, a web- and email-based source of news, information and comment on assisted reproduction and human genetics, published by Progress Educational Trust.