As with organ donation, the National Donor Family Council (NDFC) of the National Kidney Foundation believes that a crucial element of the tissue donation process is the informed consent of the family. With respect to tissue donation, informed consent must, at an absolute minimum, include a voluntary decision based on full disclosure of the facts.
Full disclosure includes the following elements:
- Families should be given a general explanation of the tissue donation process, including:
- medical and social history
- communicable disease testing
- laboratory testing
- medical suitability
- how tissue is recovered, processed, stored and distributed
- Families must be told what tissue can be recovered from their loved ones based on medical suitability. If heart valves will be recovered, families must be informed that the heart will be removed from the donor's chest and sent to a facility where the valves will be removed. If the entire eye will be removed for corneal donation, families should be informed.
- Families must be informed that tissue can be used or modified in various ways for transplantation in a life-saving capacity, transplantation in a life-enhancing capacity, and medical research or education.
- Families must be told that they have the right to limit or restrict the use of the tissue.
- Families must be told about the likelihood that the donated tissue will be stored, how it will be stored, the duration of storage, and the possibility that the tissue may not be utilized.
- The completed consent form must be reviewed with the family before final consent, and a copy should be offered to the family. Other written material explaining tissue donation should be offered to the family.
- Families must be given the option of receiving acknowledgement of their gifts. This acknowledgement should include disposition and any recipient information available at that time, while protecting the anonymity of both donor and recipient. To obtain additional information about the gift, the donor family should be provided with contact information (including phone number and address) for the recovery agency.
As approved by the NKF National Donor Family Council Executive Committee and the NKF Board of Directors, September 25, 2000.