Analysis of State Actions Regarding Donor Registries. APPENDIX C: Summary of Conference: "Are Donor Registries Advance Directives?: Developing, Modifying, and Linking Statewide Donor Registries." New Orleans, Louisiana, July 27-28, 1999

01/04/2000

This summary provides an overview of the issues, key points, and findings of the July 27-28, 1999, conference on addressing the question of whether inclusion in a donor registry represents an advanced directive. As an accompanying theme throughout the two days, conference attendees were asked to deliberate on developing, linking, and modifying statewide donor registries. The substantive foundation of the conference was current or pending state legislation pertaining to donor registries.

While the question of whether a donor registry constitutes an advanced directive was posed as a major consideration for the conference, several other pertinent issues arose during the course of discussion. These issues included, but were not limited to:

  • Design and use of a donor registry
  • Ethical and legal considerations regarding informed consent
  • Evaluation of registry development efforts

The first day of the conference consisted primarily of recovery agency personnel detailing for the group their efforts in the area of developing and modifying their respective donor registries. Some discussion regarding the issues of advanced directives, informed consent, potential uses of donor registries, and legislation evolved from these presentations, although lengthy discussions on these topics were reserved for the second day.

During the course of the conference, participants called into question the feasibility of linking donor registries in a way that involved electronic connections between the various databases. Trying to link registries in this fashion was thought to be impractical due to both the substantial cost of such an effort and the differing developmental stages of each of the state registries. Instead, the group deliberated on a less integrated approach involving a system of increased accessibility between states. The group agreed that, if a system of increased accessibility among state registries is implemented, three factors must be considered:

  • Establishing specific purposes (e.g., education, procurement, and/or demographic tracking) each state has for the donor registry;
  • Establishing consensus on a set of guidelines for accessing the database; and
  • Assuring proper authorization for those accessing the information.

A more detailed description of major areas of conference discussion is provided below. This does not include summaries of state-by-state programs.