Anonymity in live kidney donation reconsidered: patients’ and do-nors’ experiences, preferences and attitudes

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D. Slaats, A. Lennerling, K.A.M.I van Donselaar-van der Pant, I.M. Dooper, R.A.M. Meijer, P. Ulrichts, J.M. Wierdsma, C. Schrauwers, J. van de Wetering, W. Weimar, M.G.H. Betjes, W. Zuidema, N. Mamode, F.J.M.F. Dor, E.K. Massey

Chair(s): dr. Marlies Reinders, LUMC & prof. dr. Robert J. Porte

Thursday 10 march 2016

16:00 - 16:10h at Theaterzaal

Categories: Best abstracts

Parallel session: Plenaire sessie XV - Top 4 Best abstracts

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Background:
In recent years the numbers of unspecified kidney donation and (domino)paired exchange procedures have increased significantly. In the Netherlands and Sweden anonymity is perpetual in such procedures. Anonymity protects donors and recipients against potential risks. Though, imposed anonymity could be experienced as paternalistic. Little is known about the experiences, preferences and attitudes of donors and recipients towards anonymity.

Methods:
Participants who received/donated a kidney anonymously (directly or via (domino)paired kidney exchange) between 2009-2014 (NL) and between 2004-2014 (SW) were invited for an explorative retrospective survey on experiences, attitudes and preferences regarding anonymity. The survey was completed by 258 donors (D) and 157 recipients (R) (response-rates: D:72% and R:48%). Chi-squared and t-tests were conducted to identify differences between D and R.

Results: 
Our results suggest that the majority was satisfied with anonymity before (87%) and after the operation (80%). The desire to meet the other party before (D:7%, R:15%) and after the operation was low (D:22%, R:31%). Recipients were more open for a meeting than donors p

Conclusion: 
Although donors and recipients prefer anonymity, a strict policy on anonymity is viewed as unnecessary if both parties agreed to meet. We might reconsider the anonymity-policy. Revoking anonymity generates practical and ethical challenges. We should carefully consider the pros and cons of the removal of anonymity and experiences of other countries.