research participants and nonparticipants selected by commission staff from a master list of all prisoners and found that, overall, participants valued the opportunity to participate in research and felt they were sufficiently informed and free to enroll or withdraw at will, and nonparticipants did not object to this opportunity being available to others (NCPHSBBR, 1976).

“My experience has really been that prisoners want access to innovative intervention programs. They want to change. They want to have access to the things that are going to help them, and that is one reason why people become involved, at least in working with us,” said Olga Grinstead, Ph.D., adjunct associate professor at the University of California, San Francisco’s Center for AIDS Prevention Studies, when she spoke to the committee in July 2005. She continued, “From the issue of equity or the issue of justice, there are advantages to being involved in research. We need to be aware that prisoners are motivated to be involved in research. They are motivated to give back, and that should be taken into account too.”

This message continues to be articulated today. This committee visited one prison and one prison medical facility to discuss experimentation with current prisoners and peer educators (see Appendix A). The prisoners actively expressed the desire to have access to research. They stated they would feel they had a choice as to whether to participate and that they know their rights when it comes to study participation. The prisoners and peer educators at those site visits also echoed the sentiment that prisoners possess sufficient autonomy to make informed decisions about whether to participate in a given study.4

This, combined with the myopic emphasis on informed consent, is why the current categorical regulatory approach should be abandoned in favor of a risk-benefit paradigm. The following recommendations strive to acknowledge that, in limited circumstances, the potential benefit of a research protocol can justify research involving prisoners. These limited circumstances cannot be captured by a rigid categorical approach but need to be

4

Of course, this survey only represents the views of a limited sample of prisoners. Although many inmates might share these opinions, others might feel that their circumstances do not permit the exercise of autonomy. This emphasizes the need for setting specific collaboration, discussed in detail later.



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