title: Attitudes of Lay Stakeholders and Transplant Professionals About Disclosure to Living Kidney Donors in Exchanges and Chains.
abstract: BACKGROUND
  Current policies require very limited informational disclosure between living kidney donors and recipients regardless of the relationship type. No specific policies exist to suggest that exchange/chain donors and their recipients should be treated differently. We surveyed transplant professionals (surgeons and nephrologists) and members of the National Kidney Foundation (NKF) to determine their support for disclosing to donors the health, health behavior, and social information of their exchange/chain donors and exchange/chain recipients.
  
  
  METHODS
  Twenty questions regarding disclosing to donors information about both their exchange/chain donors and exchange/chain recipients were included in 2 larger surveys on disclosure about kidney transplantation. Survey A was sent electronically to NKF list-servs, and survey B was sent to transplant professionals both electronically and by postal mail.
  
  
  RESULTS
  Survey A yielded 236 valid surveys from NKF donors and recipients (lay stakeholders). Survey B yielded 111 valid surveys from transplant professionals. Both sets of stakeholders support disclosing to donors some health and health behavior information of their exchange/chain donor and exchange/chain recipient, and mostly oppose disclosure of social information. Lay stakeholders favored disclosing significantly more information than transplant professionals. Among lay stakeholders, donor respondents were more supportive than recipient respondents in disclosing to donors health information about the exchange/chain recipient. Among transplant professionals, surgeons were more supportive than nephrologists in disclosing to donors information about the exchange/chain recipient that may impact graft survival.
  
  
  CONCLUSIONS
  There is broad stakeholder support for disclosing some health and health behavior information to donors about their exchange/chain donors and recipients.
authors: 1 Department of Obstetrics and Gynecology, Northwestern University, Chicago IL, USA.
authors: Allison
authors: A
authors: Grubbs
authors: 2 Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia PA, USA.
authors: Jaqueline
authors: J
authors: Meadow
authors: 3 Department of Surgery, University of Chicago, Chicago, IL, USA.|4 MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL, USA.
authors: J Richard
authors: JR
authors: Thistlethwaite
authors: 3 Department of Surgery, University of Chicago, Chicago, IL, USA.|4 MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL, USA.|5 Department of Pediatrics, University of Chicago, Chicago, IL, USA.
authors: Lainie F
authors: LF
authors: Ross
mesh_terms: D001290:Attitude; D030881:Disclosure; D015438:Health Behavior; D006801:Humans; D007668:Kidney; D016030:Kidney Transplantation; D019520:Living Donors
keywords: disclosure; ethics; kidney donors; kidney paired exchange; kidney transplantation; living donors