Shaping individual choice for public benefit: Promoting deceased organ donation in a system of informed consent

The limited availability of organs is a major constraint on transplantation surgery. Many countries, including Argentina, have therefore introduced ‘presumed consent’ with the aim of increasing deceased donation. This circumscribes the autonomy of potential donors and their kin, with consent presumed unless actively revoked. Other countries (including USA and UK) retain ‘informed consent’(‘opt in’), with individuals voluntarily joining the organ donation register and kin making the final consent decision at the time of bereavement, generally following the deceased’s wishes where known.

Deceased donation, unlike most health choices, requires individuals and families to give organs as an act of civic behaviour oriented towards improving or saving the lives of stranger(s). We consider approaches to changing choices and actions in the context of the public discourse of organ donation in the UK.  This currently emphasises a deficit model and ‘nudging’ actions to encourage the 'right' choices for society (public benefit), with legislation as a last resort or only when there is a societal consensus. We discuss the assumptions and limitations of this approach, including the varying  constraints on the choice and actions of different ‘publics’, particularly minority ethnic groups with high needs for transplantation but low donation rates. This draws on questionnaire surveys and 22 focus groups conducted with five minority ethnic groups in London (UK). A major limitation on choice and actions was participants’ lack of knowledge of needs and organisational processes. However personal choices were also shaped by social and cultural contexts; many people of Indian, Bangladeshi and Pakistani origin experienced uncertainties regarding religious and cultural values, whereas the discourses of Black Nigerian and Caribbean participants often emphasised lack of trust in professionals and the organ allocation system. The implications of the perceptions and experiences of different publics are considered for donation policy and practice.