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Justice Considerations

The therapeutic potential of stem cells for treating and possibly curing many serious diseases constitutes a major rationale for large-scale investments of public and private resources in human stem cell research. To justify doing so, however, requires some assurance that people in need will have access to the therapies as they become available. Principles of justice are based on treating persons with fairness and equity and distributing the benefits and burdens of health care as fairly as possible in society. This would require equitable access to the benefits of stem cell research, without regard to the ability to pay.

Several factors make it unlikely, however, that there will be equitable access to the benefits of this research in this country. Unlike other western democracies, the United States does not have a commitment to universal health care. Currently the trends are in the opposite direction. 44.3 million people (16.3% of the United States population) lack health insurance and therefore do not have reliable access even to basic health care.United States Census Bureau, Health Insurance Coverage, 1998. http://www.census.gov/hhes/www/hlthins.html. Others are under-insured. Moreover, if stem cell research results in highly technological and expensive therapies, health insurers may be reluctant to fund such treatments.

Another factor complicating the commitment to just access is the central role of the private sector in stem cell development. The private sector makes determinations about investments on the basis of potential profitability. This has several implications. The private sector will not invest resources in potential applications that they consider lacking in commercial value, but that may have considerable therapeutic promise. Commercial considerations will also affect the pricing of stem cell products. Here again, market concerns could raise prices, making stem cell therapies more expensive. Unless the federal government assumes a central role in setting priorities and investing in stem cell research, some of the most needed therapies may not be developed. These justice considerations are a further reason for encouraging federal support for stem cell research.

Problems of access and equity are even greater on a global level. Vastly unequal resources, differential standards of public health, and uneven opportunities for health care within and between countries comprise barriers to achieving even a semblance of distributive justice. The World Health Organization has reminded member states that “justice demands equitable access to genetic services.” WHO has also stated that “Genetic services for the prevention, diagnosis and treatment of disease should be available to all, without regard to ability to pay, and should be provided first to those whose needs are greatest.”World Health Organization, "Proposed International Guidelines on Ethical Issues in Medical Genetics." Report of a WHO Meeting on Ethical Issues in Medical Genetics, Geneva, 15-16 December 1997.... It will be difficult to achieve these norms in a global economy in which transnational corporations play a dominant role and disparities of all types are ever growing greater.Mathews, J.T., "Power Shift." Foreign Affairs, 76: 50-54 (1997); Slaughter, A.M., "The Real New World Order." Foreign Affairs, 76: 183-97 (1997).

Overcoming these hurdles and assuring equitable access to the benefits of stem cell research in this country will be a politically and financially challenging task. It is therefore appropriate to begin considering how to do so now in advance of the development of applications. Therefore, the federal government should consider ways to achieve equitable access to the benefits derived from stem cell research.

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