The social, ethical and legal issues surrounding organ donation are often highly emotional on a personal level and controversial on a national level.
In considering how to increase organ donation rates in order to reduce the disparity between demand and supply, research from current and former faculty at Southern Illinois University Carbondale suggests there is no one-size-fits-all legal solution for governing organ donation.
Rather, research by Michele L. Mekel and Wayne Paris indicates that to be successful, the legal system a country adopts to govern organ procurement and distribution must match with the country’s overarching value system. Mekel, an assistant professor at the SIU School of Law, and Paris, an associate professor at Abilene Christian University School of Social Work, began research last year on identifying and assessing various international legal approaches governing organ procurement and distribution.
Mekel is also with the law school’s Center for Health Law and Policy, and has a cross appointment as an assistant professor in the SIU School of Medicine’s Department of Medical Humanities. Paris is a former assistant professor in the School of Social Work at SIUC.
Increasingly, the quality of life — and even survival — for many people depends on receiving an organ transplant. The demand is not keeping pace with the supply. According to the U.S. Health Resources and Services Administration, the number of people in the United States awaiting an organ transplant as of Feb. 10 stood at 110,324, an increase of more than 84 percent from the 59,862 people on a waiting list in 1998. In 2008, the number of people needing an organ transplant was 100,597, while the total number of U.S. organ donors was 14,203, including 6,219 living donors, according to federal data.
Mekel said research goals are two-fold: identify the legal structures and underlying social values in place in selected nations around the world with regard to organ procurement and distribution, and assess how differing legal approaches might align with underlying social values in order to create systems that are both socially and legally viable, and that, as a result, increase organ donor rates.
There are four primary donation systems found throughout the world — presumed consent, opt-in, registered donor priority for transplants, and legalized donor compensation.
Presumed consent systems have a legal presumption that individuals will donate their organs upon death. There are two forms of presumed consent systems. In “soft” presumed consent systems, people may choose to decline to participate by voluntarily opting out prior to their death, or the person’s attending physician or family can also decline to donate the person’s organs after they die, Mekel said. A “hard” presumed consent system, such as the one in place in Austria, is much more strict, and typically only the individual organ donor can opt out in writing prior to death, she said.
Great Britain and the United States use an “opt-in,” system, in which donors must explicitly decide whether to donate their organs, Mekel said. In an opt-in system, the legal presumption is that people do not wish to donate their organs unless they expressly choose to become organ donors and take specific steps to make that choice known, Mekel said.
The U.S. system has a few limited exceptions, created by state law, in which presumed consent can come into play, Mekel said. Some states, including Illinois, have narrowly tailored presumed consent laws, which provide that, in certain circumstances, specific tissues, such as corneas, may be taken for transplant without donor consent, she said.
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Several countries use a combination of systems. Austria, for example, has both a “hard” presumed consent system and a priority system, where those who opt out go to the bottom of the donor list in the event they need a transplant.
“This combination of hard presumed consent for organ donation and donor priority for organ distribution reinforces a societal norm that strongly favors organ donation in the Austrian system,” she said.
Singapore and Israel also utilize registered donor priority systems. In Israel, a person who is a registered donor or previous donor receives priority on organ recipient waiting lists.
Iran utilizes legalized donor compensation, where there is a combined government and private funding mechanism to pay people for donating a kidney. The compensation applies only to kidneys, the most needed organ, and Iran is the only country in the world where demands for kidney transplants do not exceed supply, she said.
Mekel said she is not surprised by the disparity between organ demand and organ supply in the United States and in most other nations. People are living longer and there is an increasing prevalence of obesity and hypertension, which can contribute to chronic conditions such as diabetes, which, in turn, can lead to conditions that include kidney failure. The increased emphasis on traffic safety is also helping lower the number of donors due to a decline in fatal vehicle accidents, historically another resource for organ donations, she said.
In the United States, it is illegal to buy and or sell organs. Mekel said the laws that govern the U.S. organ procurement system — including the National Organ Transplant Act and the Uniform Anatomical Gift Act — “make it very clear that the American system is based on altruism,” she said.
As for augmenting the nation’s current system with additional approaches to enhance donation rates, Mekel said a priority system, such as the kind used in Israel, might work well because “it comports with the current altruistic, opt-in system,” and is also in line with the nation’s “entrenched” values that favor individual rights.
Mekel’s expertise is in bioethics and the law. The research helps to address the legal, bioethical and social implications that organ procurement and distribution systems raise, and examining various systems in use around the world and values underlying those systems, she said.
“There is no one size fits all system. Nations must adopt an organ procurement system and distribution system that fits with their overarching values or it will not be successful,” she said.