From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research

The aim of this paper is to examine the meaning of the concept of donation
in health research. Drawing on a set of narrative interviews with people
invited to donate biosamples for research and a range of other studies, we
identify several conceptual themes that speak to the complexity of the
current landscape of critical thinking about donation.
These conceptual themes are: the language of ‘donation’; a hierarchy
of biosamples; alternative informational value; narratives as donation;
coincidental donation, convenience and degree of invasiveness; and rights,
consent and benefits of research participation.
We call for a reconceptualization of research donation to encompass not
only the numerous types of sample readily classed as donations, but also
other types of data and contributions, including narrative interviews,
psychometric data, patient-reported outcome measures, record-linkage,
and time and effort. We argue for the development of a pluralist sociology
of research donations, and suggest that a ‘sociology of research
contributions’ might better capture this complexity.