Precautionary Governance, Participation, Engagement, Tissue and Research

Abstract

In earlier chapters of this book I have already analysed a number of aspects of the debate on human tissue research. I have briefly evidenced the issues from the perspective of some of the participants and discussed some of the work of some academics who have written on the issue. Broadly speaking I have focused on the discourse around human tissue. In this chapter I move to a more substantive discussion of: underlying philosophical, social and legal theory relating to tissue governance; the substance of governance itself; and the consequence of this for research using human tissue. As a broad organising principle I start from Dewar and Boddington’s point, discussed in Chapter 3, that two themes were prominent in the discourse around Alder Hey: that of the mad, bad, scientist; and the idea of residual feeling in the dead or parts of the dead. In moving from an analysis of discourse to a consideration of the substance of governance I modify the first point to consider the less dramatic but probably more significant point that, in contemporary discourse and governance research as an activity has been singled out for particular, and particularly critical, attention. Relatedly, I extend their second point to consider the ways in which the status of all tissue has been raised. These two processes, I will show, were heavily influenced by a combination of government and media activity, and academic analysis and activism.

Fundamentally, there was a social and ethical time bomb waiting to go off. It is no surprise that the explosion of anger when it came was huge. The cause lay in two conflicting attitudes. For the parents of a recently deceased child, human material, certainly substantial specimens such as organs and parts of organs and even smaller samples, are still thought of as an integral part of the child’s body and thus are still the child. For the pathologist and the clinician the material is regarded as a specimen or an object. It is dehumanised.

Ian Kennedy et al., 2000