Disclosing Recipient Information to Potential Living Donors: Preferences of Donors and Recipients, Before and After Surgery

Authors

  • J. R. Rodrigue,

    Corresponding author
    1. Center for Transplant Outcomes and Quality Improvement, The Transplant Institute, Beth Israel Deaconess Medical Center, Boston, MA and the Harvard Medical School, Boston, MA
      Corresponding author: James R. Rodrigue, PhD, jrrodrig@bidmc.harvard.edu
    Search for more papers by this author
  • K. Ladin,

    1. Center for Transplant Outcomes and Quality Improvement, The Transplant Institute, Beth Israel Deaconess Medical Center, Boston, MA and the Harvard Medical School, Boston, MA
    2. Harvard University, Interfaculty Initiative on Health Policy, Cambridge, MA
    Search for more papers by this author
  • M. Pavlakis,

    1. Center for Transplant Outcomes and Quality Improvement, The Transplant Institute, Beth Israel Deaconess Medical Center, Boston, MA and the Harvard Medical School, Boston, MA
    Search for more papers by this author
  • D. A. Mandelbrot

    1. Center for Transplant Outcomes and Quality Improvement, The Transplant Institute, Beth Israel Deaconess Medical Center, Boston, MA and the Harvard Medical School, Boston, MA
    Search for more papers by this author

Corresponding author: James R. Rodrigue, PhD, jrrodrig@bidmc.harvard.edu

Abstract

Consensus guidelines, while recommending that potential living donors should be given information that could impact their donation decision, are nonspecific about the types of information that should be disclosed. We surveyed potential (n = 36) and past (n = 45) living donors and transplant candidates (n = 45) and recipients (n = 45) about their preferences for sharing or knowing specific information about the recipient, how this information would impact decision-making, and who should be responsible for disclosing information. Potential donors were less likely than all others to feel that recipient information should be disclosed to potential donors. Donors and recipients felt most strongly about disclosing if the recipient lost a previously transplanted kidney due to medication nonadherence as well as the likelihood of 1- and 5-year graft survival. Most donors would be less likely to pursue donation if the recipient lost a previously transplanted kidney due to medication nonadherence or generally had problems with taking medications as prescribed. Transplant programs should consider how to best balance the potential donor's right to receive information that could reasonably be expected to affect their decision-making process with the recipient's right to privacy and confidentiality.

Ancillary