Abstract

The empirical turn in bioethics and the deliberative turn in democracy theory occurred at around the same time, one at the intersection of bioethics and social science,1 2 the other at the intersection of political philosophy and political science.3–5 Empirical bioethics and deliberative democratic approaches both engage with immediate problems in policy and practice with normative intent, so it was perhaps inevitable that they would eventually find one another,6–8 and that deliberative research would become more common in bioethics.9 This commentary responds to a paper by Ford et al, who ran a single jury of 18 people in Brighton in the UK in June 2018.10 The jury were asked to consider whether secondary research use of non-structured, free-text data from medical records should be permitted. I will consider three issues: the effort required in deliberative work, the challenge of sampling and selection of jurors and the basis for drawing normative conclusions from deliberative research. First: this report makes clear the effort involved in running a jury. These researchers contracted an external agency experienced in the method, established an oversight committee of policy-makers with power to act, developed expert witness briefs, selected witnesses and coordinated their testimony, and created a questionnaire to measure participants’ views, activities to support their understanding, and a scenario for consideration. …