This section outlines implications of the recent applicable state legislative actions. In some cases, state legislative efforts may represent obstacles to the evolution of registries, although the majority of state actions are expected to enhance the development, modification, and possible linkage of state donor registries. This discussion also includes identification of issues related to the donation process that might be clarified with further state legislation (e.g., more clearly defining the functions of the registry, or developing minimum levels of information necessary to establish informed consent).
Potential Solutions not Apparent in State Actions
While a substantial number of state legislative measures have been enacted in recent years covering most aspects of the donation process, donor registries, and advanced directives, some areas are in need of further legislation. These areas broadly include defining the functions of registries, analyzing and standardizing registries, applying statistical analysis to registry data, addressing ethical issues surrounding the donation process, addressing liability resulting from failure to act on advanced directives, establishing coordination guidelines between those involved in the process, and detailing technical issues related to donor registries. These topics are outlined in greater detail below.
- Each state needs to clearly define the major functions of its registry. These functions include, but are not limited to, public awareness and education, increasing the number of donors, collection of funds, easing the consent process, and the use of registry information as an advance directive.
- An analysis should be conducted of the key aspects of model state registry programs. Pennsylvania, for example, often has been cited for its innovative and effective program (Nathan, 1999). Further, if a standard model is provided to states that are still developing their registries, future linkage would be facilitated with increased uniformity across states.
- The collection and statistical analysis of each state’s registry data could provide insights into the effectiveness of public awareness and educational campaigns, and aid in determining which specific areas are in need of additional public awareness efforts.
- A more comprehensive consideration of the legal and ethical aspects of using a unilateral or bilateral advance directive should be conducted. For example, it may be determined that if a positive designation on valid donor constitutes a binding advanced directive, then the negative designation should be clearly and consistently interpreted as well.
- Further study and appropriate legislation should be devoted to clarifying whether failure to act on an advance directive leaves hospital and procurement personnel open to liability from potential recipients who do not receive organs.
- Additional efforts should be made to establish programs designed to promote coordination among primary care physicians, lawyers, hospitals, OPOs, and other entities and individuals relevant to the donation process.
- Further efforts should be made to develop computer registries for inter-state linkage and 24-hour access.
- Actions to standardize (on a statewide or nationwide basis) and legally verify consent documentation would lessen the liability of hospital and procurement personnel carrying out advance directives.
- Development, modification, and standardization of donor registries have potentially substantial cost burdens. Legislation should address funding mechanisms for these efforts.
- Consensus does not exist in the procurement community regarding the contents of donor registry databases. Further clarification of what should be included in the database may be appropriately addressed by state legislation.