Understanding why individuals opt out of living donation is crucial to enhancing protections for all living donors and to identify modifiable barriers to donation. We developed an ethical approach to conducting research on individuals who opted out of living kidney donation and applied it in a small-scale qualitative study at one US transplant centre. The seven study participants (64% response rate) had varied reasons for opting out, the most prominent of which was concern about the financial burden from lost wages during the postoperative period. Several reported feeling alone during their decision-making process. Although no participants used an alibi, a centre-provided statement of non-eligibility to donate, all believed that centres should offer alibis to help preserve donor autonomy. Given the complexity of participants' decisions and the emotions they experienced before and after deciding not to donate, we suggest approaches for independent living donor advocates to support this population. This study demonstrates that research on individuals who opt out of donation is feasible and yields valuable insight into methods to improve the evaluation experience for potential living donors.
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Contributors CT and SK developed the study protocol. MJ assisted with participant recruitment. CT and ZJ conducted the interviews and performed the qualitative data analysis. CT wrote the first draft of the manuscript. MJ, PR, EJG, PZ and SK contributed to the interpretation of the data and edited drafts of the manuscript. All coauthors gave final approval for the work to be published.
Funding The Section of Organ Transplantation and Immunology at the Yale School of Medicine funded this research.
Competing interests None declared.
Ethics approval Yale School of Medicine's institutional review board.
Provenance and peer review Not commissioned; externally peer reviewed.
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