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1.0 Introduction
Organ transplantation has grown into a major therapeutic intervention since the first successful organ transplant was performed in the United States in 1954. In 2005, more than 28,000 patients in the U.S. received organ transplants from a record 7,593 deceased donors and another 6,901 living donors. These donors, however, could not accommodate the mounting waiting list that exceeded 90,000 by year’s end. Unfortunately, more than 7,000 of the wait-listed patients died because an organ never became available (Organ Procurement & TransplantationNetwork, not a U.S. Government Web site).
A substantial imbalance between supply and demand for organs has been and continues to be the nemesis of the field of transplantation. Medical, scientific, and pharmacological advances have made transplant a remarkable and viable option for many terminally ill patients — most of whom have no other option. Science, however, cannot provide the organs needed to make transplantation a reality; for organs, those waiting are dependent upon the generosity of the American public.
Assessing people’s knowledge, views, feelings, and actions related to organ donation is instructive for developing strategies to increase donation. In 1993, The Partnership for Organ Donation commissioned The Gallup Organization to conduct a national representative survey of the American public’s attitudes, behaviors and opinions about organ donation. Information from that survey has been used widely over the years.
In 2004, the U.S. Department of Health and Human Services contracted with The Gallup Organization to conduct a similar survey both to obtain more current information and to detect changes over time, if any. Gallup worked closely with the Division of Transplantation (DoT) of the Health Resources and Services Administration to identify topics to be covered. In turn, DoT sought input from the transplant community. Resulting topics included general support for donation, granting permission to donate, willingness to donate among those who haven’t given permission in a registry or on a license or donor card, living organ donation, presumed consent, financial incentives, attitudinal drivers of organ donation, and sources of information about organ donation. Many of the 2005 topics and questions replicated those in the 1993 survey. Minorities were oversampled to ensure adequate participation in the 2005 survey and the integrity of the conclusions to be drawn about these groups.
Despite widespread support for organ donation among the general public in 1993, not enough people granted permission for organ donation. The 1993 survey found that 85% of respondents supported the donation of organs for transplant and 69% were “very” or “somewhat” likely to want to have their organs donated after death. In contrast, only 28% had granted permission for organ donation on their driver’s license or a signed donor card.
In the years since the 1993 survey, the federal government, the transplant community, and many other devoted entities have attempted to increase the supply of organs by implementing numerous public and professional education and outreach activities. Other types of strategies to enhance the availability of organs have included the expansion of donor criteria, the use of donors after cardiac death and the use of living unrelated donors.
Some strategies have been proposed and debated over many years but not implemented. These include presumed consent (an opt-out donation system), mandated choice (requiring individuals to declare a yes or no response to donation), financial incentives to encourage families to donate a loved one’s organs, and xenotransplantation (transplanting animal organs into humans). Controversy over their integrity and potential public impact are among the factors that have precluded their implementation. Mandated choice and presumed consent, for example, have been debated as possible violations of personal freedom or the right to privacy (Saunders, 1998). Financial incentives, currently illegal, also have been a highly controversial alternative. Many authors have argued that incentives change the fundamental nature of donations while the gift-giving approach is congruent with and supportive of important human values such as compassion and altruism while maintaining human dignity. Caplan and colleagues have argued that compensation converts donors into sources and human beings into products, undermining respect for others and self-esteem (Caplan, Van Buren, and Tilney, 1993). In a thorough review of pro and con professional papers on these issues, the Institute of Medicine (Institute of Medicine, 2006) recently recommended that neither presumed consent nor financial incentives should be implemented in this country at this time. A national poll to tap the public’s attitudes about these issues, however, has not been conducted since the 1993 Gallup survey. Understanding current public views of these issues may be instructive for the transplant community as it continues to consider or reject various options for increasing donation.
It is anticipated that the 2005 survey results presented below will at times confirm what is already believed by the transplant community and offer new information in other situations. Perhaps most important are findings that confirm that progress has indeed been made over time and findings suggesting where more time and efforts might be useful.
Some of the items used in the survey questionnaire for this study are proprietary content owned by The Gallup Organization. A complete list is found on the Copyright page. Copyright © 1993, 2005 The Gallup Organization, Washington, D.C. All rights reserved.
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