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Summary Article: Organ Donation
from Science and Politics: An A-to-Z Guide to Issues and Controversies

Organ donation is the surgical process of removing one or more organs from one person, the donor, to be used for transplantation into another person, the recipient. Organ transplantation is necessary when a patient's organ has failed or has been damaged by disease or injury. This is referred to as end-stage organ failure. Organ donors can be deceased or living donors. Individuals who are determined to be brain dead can be organ donors and their organs used for transplantation. Although most organ donations occur after the donor has died, some organs can be donated from a living donor.

History of Organ Donation

The first successful kidney transplant was performed in 1954. This was followed by successful transplants of combined kidney/pancreas (1966), liver (1967), heart (1968), and isolated pancreas transplant (1968) (United Network of Organ Sharing [UNOS] 2012a). At that time the lack of organs to transplant and affordable transplantation were two major barriers to increasing the number of transplant recipients.

During these early years of transplantation, most kidney transplants were performed with living donors by using a kidney from an immediate family member. As the number of kidney dialysis patients in need of transplantation increased, so did the barriers of the lack of organs and the cost of transplantation. The Social Security Amendments of 1972 (PL 92–603) addressed the problem of cost by extending Medicare coverage to individuals with end-stage kidney disease for dialysis or transplantation (Eggers 2000). But it also led to a further increase in demand of organs for transplantation. The Uniform Brain Death Act, enacted in 1978, expanded the traditional definition of death to include brain death and thereby increased the number of organs available for transplantation (Organ Procurement and Transplantation Network [OPTN] 2012). The Medicare coverage and the statutory definition of brain death had an influence on the availability and accessibility of organ transplantation.

Further advancements in medical science continued to increase the possibilities for organ donation and transplantation with the first successful double-lung transplant (1986) and intestinal transplant (1987) (UNOS 2012a). Again, with each of these medical advances the need for organs exceeded the number of organs available for transplant.

Why Are Organ Transplants Needed?

People need an organ transplant because an organ that they need to continue living is failing to function. Many diseases and conditions can lead to end-stage organ failure. An organ transplant can save the life of the recipient who would otherwise die (Ganikos 2010).

As a result of the scientific medical advances, deceased donors (cadaveric donors) can provide up to eight organs. The eight organs include two kidneys, heart, two lungs, liver, pancreas, and small intestine. A living organ donor can donate one kidney or a lobe (a section) of a lung or a liver to someone in need of an organ transplant.

Even with the medical advances and breakthroughs, which have allowed for a larger number of organ transplants and a longer survival rate for transplant recipients, the need for organ transplants continues to exceed the organs available for transplantation. The number of people on the waiting list for an organ continues to increase each year. In 2012 there were over 116,000 people in the United States waiting for an organ transplant while only 28,537 organ transplants were performed in 2011. Approximately 6,000 to 7,000 patients on the waiting list die each year before an organ becomes available for transplant (OPTN 2012).

There are several reasons for the organ shortage, including clinical issues, structural barriers, and social-psychological barriers, which reduce the number of potential organ donors. Clinical issues include the very small number of patients in the United States that are declared brain dead and can be potential donors. Further, some of these possible donors are medically unsuitable for donation due to condition of the body or other medical factors. Structural barriers to donation include the lack of information about an individual's wishes to become an organ donor or failure to obtain consent from the family.

Social-psychological barriers also contribute to the donor shortage. Although most people in the United States support organ donation, many of them do not register to be an organ donor (Ganikos 2010). A national survey conducted by the Gallup Organization found that 95 percent of Americans support organ donation and 78 percent of Americans report they are likely to have their organs donated after their deaths. In the same survey, 53 percent of American adults report they have granted permission for donation of organs or tissue on a driver's license or an organ donor card (Gallup Organization 2005). Donor registration rates, also called donor designation rates, vary widely across the fifty states (National Donor Designation Report Card 2012). Improvement in the consent process for deceased (cadaveric) donors has been identified as a way to increase organ donors in the United States (Wendler and Dickert 2001).

Politics and Policy

Federal policy has been put into place for the allocation, distribution, and transplantation of donated organs. The Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services (USDHHS) is the federal agency with the responsibility for the oversight of the transplant system in the United States. States have also developed policies to address the implementation of federal policy. There are many policies developed to address organ donation and transplantation.

Federal Policy

The Uniform Anatomical Gift Act (UAGA) of 1968 provides the legal foundation for human organ and tissue donation for transplantation in the United States. The UAGA of 1968 authorizes persons eighteen years of age or older to make a gift of any part of their bodies with such gift to take effect upon their death. The UAGA further provides that the anatomical gift cannot be rescinded by another party without the donor's consent. Provisions of the UAGA include consent forms, such as a driver's license option; the definition of the next-of-kin (who would sign the consent for donation); and defining consent as a legal donor document. The UAGA was amended in 1987 and in 2006. Since 1972, all fifty states and the District of Columbia have adopted the UAGA, or the amended forms of the UAGA (OPTN 2012).

To further address the organ donation shortage and improve the organ matching process, the U.S. Congress passed the National Organ Transplant Act (NOTA) (Public Law 98-507) in 1984 and amended in 1988 and 1990. NOTA outlawed the sale of human organs, authorized the Secretary of U.S. Health and Human Services (USDHHS) to establish qualified organ procurement organizations (OPO), and established the Organ Procurement and Transplantation Network (OPTN) to maintain a national registry for organ matching. NOTA also called for a network, which became the United Network of Organ Sharing (UNOS), to administer the OPTN under contract with Health Resources and Services Administration, U.S. Department of Health and Human Services (HRSA/USDHHS) (OPTN 2012).

A revision to the Omnibus Budget Reconciliation Act (OBRA) in 1987 that requires hospitals to notify organ procurement organizations regarding potential donors also had an impact on organ donation (OPTN 2012).

Even with these medical advances and federal and state policies, research in the 1990s indicated that potential organ donors were still being lost. A retrospective medical chart review of potential organ donors showed that in nearly one third of all cases either potential donors were not identified or a request was not made to the family (Gortmaker et al. 1996).

Despite legislation and policies, families continued to deny consent for organ donation of their loved ones (The Lewin Group, Inc. 2002). The reasons families often gave for denying consent included they did not know their loved one's wishes; they had never talked about donation; they were uncomfortable about talking about death; and they made their decisions based on their own beliefs, not the wishes of their loved ones. Further, despite the UAGA's adoption in all states, some organ procurement organizations would refuse an anatomical gift if the family objected (U.S. Department of Health and Human Services 2003; Wendler and Dickert 2001). These problems led to further refinement and implementation of the UAGA in the states. The 2006 UAGA was an effort to resolve any perceived inconsistencies across the states. The 2006 UAGA also encouraged and established standards for donor registries (National Conference of Commissioners on Uniform State Laws: Revised Uniform Anatomical Gift Act 2006).

State Policy

In the United States, the implementation of the consent process is left to states within the limitations of the National Organ Transplant Act of 1984 (NOTA) (OPTN 2012). Each state's Uniform Anatomical Gift Act (UAGA) and its amendments seek to streamline the process and standardize the rules among the various states, but it still requires that the donor make an affirmative statement about his or her willingness to be a donor.

To increase organ donation, in the late 1990s states began legislating some form of donor designation to clarify that “the donor's decision is paramount and should be respected at all costs” (Sokohl 2002, 1). A donor designation is the documentation of an individual's decision to donate organs, eyes, and/or tissue after death, usually designated on a driver's license or through a state donor registry (Organ Procurement and Transplantation Network n.d.).

The most reliable method to obtain, store, and retrieve an individual's wish or willingness to be an organ donor is with a donor registry. Donor registries were first introduced in Illinois in 1993 and in Pennsylvania in 1994 (Ganikos 2010). According to United Network of Organ Sharing (UNOS), most states in the United States have implemented donor registries, and many of these registries are affiliated with the state's motor vehicles agency or other state agency.

Statewide Registries for Organ Donors

Statewide donor registries provide a mechanism, usually an electronic database, for recording, storing, and retrieving an individual's wishes to be an organ donor. Donor registries are confidential electronic databases that record a person's decision to donate. The registry is available 24/7 to authorized personnel and only when an individual is declared dead or death is imminent.

The mechanism for the organ donor registration is left to individual states, and there are variations across the states. Most registries are affiliated with the state's motor vehicle agency, allowing residents to enroll in the registry when they obtain or renew their license. Some states have the registries affiliated with the organ recovery organization or through another organization, such as the state's health department.

Having a statewide registry is not synonymous with having first-person consent or donor designation legislation in the state. Many states now have a first-person consent or donor-designated registry. Ohio's First Person Consent Organ Donor Registry is an example of this type of donor registry.

Conclusion

Scientific medical advances and federal and state policies have led to the increase in the capability to conduct organ transplants for patients in end-stage organ failure. However, the need for an organ transplant continues to outweigh the availability of organs to transplant. Legislation clarifying donor designation and government initiatives to educate the American public about organ donation have been implemented to decrease the barriers to organ donation in the United States.

Bibliography and Further Reading
  • An Act to Promote First Person Consent for the Ohio Donor Registry by Amending Ohio Revised Code: Amended Substitute Senate Bill Number 188. 123rd General Assembly (2000). http://www.legislature.state.oh.us/bills.cfm?ID=123_SB_188_.
  • Centers for Medicare and Medicaid Services, Office of Clinical Standards and Quality “Fact Sheet: Medicare End-stage Renal Disease (ESRD) Network Organization Program.” June 18, 2012. http://www.cms.gov/Medicare/End-Stage-Renal-Disease/ESRDNetworkOrganizations/index.html.
  • Childress, James F.; Catharyn T. Liverman, eds. Organ Donation Opportunities for Action. Committee on Increasing Rates of Organ Donation, Board on Health Sciences Policy. The National Academies Press Washington, DC, 2006.
  • Downing, K.; L. L. Jones. “First Person Consent Ohio Donor Registry: The Influence of the First Person Consent Registry on Increasing Organ Donation.” In Understanding Organ Donation: Applied Behavioral Science Perspectives, edited by J. T. Siegel; E. M. Alvaro. Wiley-Blackwell Publishers West Sussex, UK, 2010.
  • Eggers, Paul W.Medicare's End State Renal Disease Program.” Health Care Financing Review 22, no. 1 (2000):55-60.
  • First Person Consent Donor Registry of 21 § O.R.C. 2108.04(F) (2001).
  • Gallup Organization. National Survey of Organ and Tissue Donation Attitudes and Behaviors. Health Resources and Services Administration, U.S. Department of Health and Human Services Rockville, MD, 2005.
  • Ganikos, M.Organ Donation: An Overview of the Field.” In Understanding Organ Donation: Applied Behavioral Science Perspectives, edited by J. T. Siegel; E. M. Alvaro. Wiley-Blackwell Publishers West Sussex, UK, 2010.
  • Gilmore, L.; T. Matthews; V. A. McBride. State Strategies for Organ and Tissue Donation: A Resource Guide for Public Officials. Health Resources and Services Administration, U.S. Department of Health and Human Services Rockville, MD, 2001.
  • Gortmaker, S. L.; C. L. Beasley; L. E. Brigham; H. G. Franz; R. N. Garrison; B. A. Lucas, et al. “Organ Donor Potential and Performance: Size and Nature of the Organ Donor Shortfall.” Critical Care Medicine 24, no. 3 (1996):432-439.
  • The Lewin Group, Inc. Proceedings from U.S. Department of Health and Human Services, Health Resources and Services Administration, Office of Special Programs, Division of Transplantation: Guidelines for Donor Registry Development Conference Final Report. 2002. http://www.organdonor.gov/pdf/execsum.pdf.
  • National Conference of Commissioners on Uniform State Laws: Revised Uniform Anatomical Gift Act. 2006. http://www.uniformlaws.org/ActSummary.aspx?title=Anatomical%20Gift%20Act%20%282006%29.
  • National Donor Designation Report Card. “Donate Life America.” 2012. http://donatelife.net/wp-content/uploads/2012/06/DLA-Report-Card-2012-350781.pdf.
  • Organ Procurement and Transplantation Network (OPTN). U.S. Department of Health and Human Services, Washington, DC, n.d. http://optn.transplant.hrsa.gov.
  • Organ Procurement and Transplantation Network (OPTN). “National Organ Transplant Act.” 1984. http://optn.transplant.hrsa.gov/policiesAndBylaws/nota.asp.
  • Organdonor.gov. “Organ Donation and Transplantation Saves Lives.” n.d. Health Resources Services Administration, U.S. Department of Health and Humans Services. http://www.organdonor.gov/about/index.html.
  • Organdonor.gov. “Legislation and Policy.” n.d. Health Resources and Services Administration, U.S. Department of Health and Humans Services. http://www.organdonor.gov/legislation/index.html.
  • Public Law 98-507, October 19, 1984. The National Organ Transplant Act (NOTA). 42 USC 201. http://history.nih.gov/research/downloads/PL98-507.pdf.
  • Rettig, Richard A.Origins of the Medicare Kidney Disease Entitlement: The Social Security Amendments of 1972.” In Biomedical Politics. Institute of Medicine. The National Academies Press Washington, DC, 1991.
  • Siegel, J. T.; E. M. Alvaro. Understanding Organ Donation: Applied Behavioral Science Perspectives. Wiley-Blackwell Publishers West Sussex, UK, 2010.
  • Sokohl, K.First Person Consent: Opos Across the Country Are Adapting to the Change.” UNOS Update. September-October 2002, 1-3.
  • United Network of Organ Sharing (UNOS). 2012a. http://www.unos.org/.
  • United Network of Organ Sharing (UNOS). “History.” 2012b. http://www.unos.org/donation/index.php?topic=history.
  • U.S. Department of Health and Human Services, Advisory Committee on Organ Transplantation, Recommendations 19-28 (2003). http://www.organdonor.gov/research/acotrecs19-28.htm.
  • Wendler, D.; N. Dickert. “The Consent Process for Cadaveric Organ Procurement: How Does It Work? How Can It Be Improved?” Journal of the American Medical Association (JAMA) 285, no. 3 (2001):329-333.
  • Kimberly A. Downing
    University of Cincinnati
    Copyright © 2014 CQ Press

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