paradigm shift from relying on the next of kin to make donation decisions for deceased individuals to using donor consent documentation, whenever available, as the official mechanism of consent for organ donation (Ojo et al., 2004). This transition will not be easy, as organ procurement organizations (OPOs) and hospitals must consider how to address the family’s changing role in the organ donation process.

This chapter discusses the issues involved in respecting, enhancing, and encouraging organ donation decisions by individuals and their families. It begins with a discussion of the strategies used to facilitate and document the decisions made by individuals to be donors (i.e., donor consent) and considers the broader educational efforts that are used to encourage individuals and their families to make the decision to donate their organs upon death. Much of the research on organ donation decision making is conducted through the extramural grants program of the Health Resources and Services Administration (HRSA). The committee was asked to provide input on that program and the information in this chapter is augmented by a discussion of the HRSA research program in Appendix E.

A FRAMEWORK FOR INFORMED CHOICE

Questions have been raised about the extent to which full informed consent is necessary for organ donation compared with the extent to which full informed consent is required for participation in a clinical trial of a medication or a medical device. That is, concerns arise about the extent to which a person signing a donor card or designating his or her preference on a driver’s license application understands the implications of the decision. The findings of research on other types of advance directives indicate that future thinking (in which the decision is made in a context devoid of actual circumstances) may be difficult for some people, and an individual’s preferences may also change over time (Beauchamp and Childress, 2001). Therefore, the use of clear decision-making pathways and the availability of easily accessible opportunities to change the decision are important.

The committee believes that informed choice rather than informed consent should be the standard for public education and other related efforts on organ donation. This is because the decision concerns the disposition of the body after death rather than the survival or the quality of life of a living person. Informed choice, as envisioned by the committee, is grounded in the same principles as informed consent: respect for the autonomous choices of an individual who has the knowledge necessary to be able to make choices that are in accordance with his or her values, beliefs, and preferences (Thompson et al., 1995; Sheehy et al., 2003). The requirements for an individual to be able to make an informed choice are a decision-making capacity (the ability to understand information relevant to the decision and



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