Stock options, tax credits or employment contracts please! The value of deliberative public disagreement about human tissue donation

• Published in: Social science & medicine (1982) 2011-07, Vol.73 (2), p.209-216
• Main Author: Walmsley, Heather L.
• Format: Article
• Language: English
• Subjects: Architects; Audiences; Biobanking; Bioethics; Biological and medical sciences; Biotechnology; Blood & organ donations; Canada; Citizen participation; Consensus; Contracts - legislation & jurisprudence; Deliberative democracy; Democracy; Diffusion of Innovation; Discourse analysis; Dissent and Disputes - legislation & jurisprudence; Emerging health technologies; Employment - legislation & jurisprudence; Ethics, Medical; Genomics; Governance; Health; Health Policy - legislation & jurisprudence; High technology; Human genetics; Human tissue banking; Human tissue banking Biobanking Deliberative democracy Public engagement Emerging health technologies Genomics Canada; Humans; Medical sciences; Miscellaneous; New technology; Politics; Public engagement; Public health. Hygiene; Public health. Hygiene-occupational medicine; Public policy; Qualitative Research; Rights; Tax credits; Taxes; Tissue and Organ Procurement - economics; Tissue and Organ Procurement - ethics; Tissue and Organ Procurement - legislation & jurisprudence; Tissues; Values
• ISSN: 0277-9536; 1873-5347
• DOI: 10.1016/j.socscimed.2011.05.005

‘Deliberative democracy’ is increasingly popular globally, as a means of securing public engagement with emerging health technologies and democratizing their governance. Architects of deliberative ‘mini-publics’ have tended, however, to privilege consensus within deliberation and the generation of ‘action commitments’ within a ‘decisional context’, despite widespread critique. Less attention has been paid to the phenomenon of persistent disagreement within constructed deliberative fora. This paper addresses this lacuna, performing a narrative analysis of four days of deliberation within one small group of demographically diverse public participants at the BC Biobank Deliberation (Vancouver, Canada, 2007). It reveals the value of listening to persistent deliberative disagreements. First, this paper argues that disagreements enable identification of deliberation and evaluation of its quality. Second, they generate insight into the deliberative process and the discursive means through which consensus can be achieved. Third, persistent deliberative disagreements can be creative of innovative governance solutions. In the case of the BC Biobank Deliberation, disagreements about compensation for biobank donors generated a range of suggestions for mediating between donor rights, corporate interests and societal needs – from tissue sample rentals to donor tax credits – suggestions that are unique to the existing academic and policy literature. Finally, this paper argues that practitioners should present persistent disagreements to public and policy audiences as an ‘output’ of deliberative democracy events. ► The BC Biobank Deliberation reveals the value of deliberative disagreement. ► Disagreements enable evaluation of deliberative quality. ► Deliberative disagreements offer insight into discursive production of consensus. ► Deliberative disagreements can generate innovative governance solutions. ► We should present persistent disagreements to public and policy audiences.