Beyond Consent

Seeking Justice in Research

By: Jeffrey P. Kahn, Anna C. Mastroianni, Jeremy Sugarman

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eText | 3 September 1998 | Edition Number 1

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Patients with cancer and AIDS now clamor for access to clinical trials. Federal policies governing research that once emphasized protecting subjects from dangerous research now promote access to clinical research. Have claims about justice and access to the benefits of research eclipsed concerns about consent and protection from risks? How can we make good and fair decisions about the selection of subjects and other questions of justice in research? Beyond Consent examines the concept of justice and its application to human subject research through the different lenses of important research populations: children, the vulnerable sick, captive and convenient populations, women, people of color, and subjects in international settings. To set the stage for this examination, and introductory chapter addresses the evolution of research policies. After a look at specific subject populations, the authors discuss the concept of justice for research with human subjects in the future and analyze justice throughout the research enterprise.