1. ESRC Genomics Network (archive)
  2. Gengage
  3. The Human Genre Project

Egenis · News

All dressed up and nowhere to go?

10.12.2009

Introduction

Should people be obliged to take part in medical research?

Story

A leading heart stem cell scientist argues in an article for the BBC that patients if people want treatment for a heart problem, they should be obliged to take part in the research. Below, Dr Dana Wilson-Kovacs and Dr Christine Hauskeller consider the issue.

"Clinical research is essential to the translation of potential treatments into recognised medical applications and trials are a necessary step in this process. From novel pharmaceutical products to innovative devices, the imperatives of safety and efficacy (ideally pursued in the context of double blind, randomised control trials) channel the direction taken by any new medical research. Understanding what works, for whom and under which conditions has become increasingly complex. This is even more the case with intricate procedures, like those involved in the use of stem cells for heart repair.

"With clinical expertise on tap it is paradoxical that patients are not more forthcoming. Professor Mathur’s remarks point to the need to understand better why and how patients in the UK decide to participate (or not) in clinical trials. Data are presently lacking and case studies are urgently required to gain in-depth knowledge of how patients see their own role and place in clinical trials. Moreover, to date we know little about both the contexts in which medical staff communicate the potential benefits of clinical trial interventions to patients and the impact these interactions make on patients’ decisions to join the trials.

"The success or failure of patient recruitment for clinical trials may depend on the socio-economic background and gender of patients, on the consent procedures in place and on the explanation of the specific interventions. Ways to widen participation may be developed, once we know about these relations - not anecdotally but supported by comprehensive sociological evidence. It is here that social science can make a difference by providing detailed analyses of recruitment practices and decision-making strategies.

"The case Professor Mathur puts forward is an illustration of the need to recognize sociological research as a necessary companion of both medical research and innovation. Indeed, given the costs of stem cell and other large clinical trials, and the complex logistics in setting them up and providing the know-how, it makes nothing short of economic sense to support social science input as an accompanying prerequisite for the progress of future biomedical research."

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