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Ethical Challenges

5. Current and Unresolved Issues

Justice:

Delivery of care/Standard of care:

In research that involves delivery of health care, the benefits often involve providing care during and after the research. Defining a fair standard of care may be problematic. Does care need to be equivalent to the best standard of care anywhere or reflect the local standard of care? How does one assure voluntary participation when research-related care may be the only care available?

Example 6


Randomized clinical trials with antiretroviral drugs are conducted in African countries that have a high rate of HIV/AIDS. The drugs promise to be effective. When the research is completed, are the researchers and/or drug companies ethically obligated to continue treatment for experimental subjects and to provide treatment for control subjects? Who should pay for the drug, manage its distribution and supervise its administration?

Compensation:

Participants in research generally are reimbursed for expenses related to their participation, e.g. travel, meals and child or elder care. They also may be compensated for time, inconvenience and for risks they accept as part of the research. Determining a just level of compensation, and particularly one that is not an undue inducement or coercive for poor and/or disadvantaged research subjects, is another issue. When conducting research with children, with decisionally impaired adults, or with a community, who should be compensated?