In light of the recent judicial scrutiny of the case of Charlie Gard, Katharine Wright, Assistant Director of the Nuffield Council on Bioethics, considers the ethical issues at stake in such cases, and what scope there is for change in the future to make such situations less unbearable for families and professionals alike. This blog draws on the conclusions of three past inquiries conducted by the Council, concerned with: critical care decisions for babies; the involvement of children in clinical research; and the regulation of novel neurotechnologies.
Monthly archives: August 2017
When I worked at the Human Fertilisation and Embryology Authority in the early years of the present century we still had a working fax machine. It sat on a filing cabinet in the middle of our floor, in a shared office building in the vicinity of Liverpool Street station. If, on any given morning, the mainstream media had happened to scratch at a contentious issue that pushed against the boundaries of our small and orderly world, it was a fair bet that at some point, as the day thickened towards lunchtime, the fax machine would begin to whir and grind. Out of it would emerge, line by line, on (I remember now) either green or lilac paper, an admonitory epistle in verse. Sometimes the poet would castigate the Authority for some regulatory decision or omission; more often than not, however, the poem would end with an unanswerable gesture into the horizonless, oceanic nihil ulterius. Where (the poet asked) will it all end?
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