Analysis of State Actions Regarding Donor Registries. Design and use of the Donor Registry

01/04/2000

Although design and use of donor registries varied considerably among different states, participants identified a common set of "typical" uses for a registry. These included:

  • Education and public awareness (especially to facilitate informed consent)
  • Increasing the number of donors in the registry
  • Collection of funds
  • Easing the consent process (by allowing recovery personnel access to registry information for use during the donation request)
  • Use of registry information as an advanced directive

Different states emphasize each of these uses to varying degrees, including states that emphasize only one aspect, e.g., education. A major distinction was made between states using the registry to aid in both education and procurement, and others that use the registry exclusively for educational purposes. Participants emphasized that not all registries were developed with all of these functions in mind, and states should not be forced to alter the goals of their registry. This variation has implications for any attempts at linking registries. The group also addressed the ethical issue of using the registry database as a means to solicit funds for its support. No clear consensus evolved from this discussion, however.