ELSIcon2022 Paper: Participation in Sickle Cell Disease Clinical Research: How the Lived Experience Shapes Altruism

The 5th ELSI Congress - ELSIcon2022

Conference

2022-06-02

ELSIcon2022 • Paper • June 2, 2022

Marilyn S. Baffoe-Bonnie

Recruiting participants for clinical studies is an essential component of biomedical research, and appealing to individuals’ altruism is sometimes used to recruit and minimize therapeutic misconception. However, little is known about what aspects of lived experience motivate this socially focused altruistic participation when participation is racialized. This study examined adults living with sickle cell disease (n=235) enrolled in a cross sectional study to investigate what aspects of the sickle cell disease lived experience, understood here as pain and illness perception, are associated with reporting subsidiary and primary altruistic motivations for participating in clinical research. Primary altruism is strong enough solely to motivate research participation, while subsidiary altruism is not. Results from two binary logistic regressions indicate that pain frequency is positively associated with greater odds of reporting subsidiary altruistic motivations, and pain frequency and pain severity are positively associated with greater odds of citing primary altruistic motivations. Conversely, pain interference and illness perception are associated with lower odds of reporting primary altruistic motivations. Regarding the former findings, since those with higher levels of pain frequency and severity are more likely to participate for only altruistic reasons, consenting requires heightened emphasis on the relative likelihood of personal and communal benefits. Furthermore, these results reveal that for minoritized populations, participation, although overwhelmingly altruistic, is rooted in an illness experience of persistent pain and racialized injustice.

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