When is a human study ethical? For years, science and society have
struggled with this question. Experts have put great effort into
developing ethical principles and rules that adequately protect and
respect volunteers in studies aimed at improving human health. But
experts have missed something important. They have created a
research ethics system without the help of people who know what it
is like to be a research subject. This is a serious omission.
Experienced research subjects can make valuable contributions to
research ethics. People who have been in studies have information
about the experience that other people can overlook. Their
experience as subjects gives them special insights into ethics,
too. Experienced subjects also know about problems that can lead
people to refuse to join studies, or drop out before studies are
complete. Scientists and ethicists often speak of subjects as
partners in research, but the reality is quite different.
Experienced subjects are rarely appointed to the advisory groups
that create guidelines for ethical research, or to the committees
that review individual studies to determine whether they meet
ethical and regulatory standards. A large body of work describes
the perceptions and viewpoints of people who have participated in
research. But experts rarely use this material to guide
improvements in human subject protection. Although subjects have
the power to decide whether to participate in a study, they have
little control over anything else that goes on in research. Silent
Partners moves research subjects to the forefront. It examines what
research participation is like for healthy volunteers and patients.
It explains why subjects' voices should influence research ethics.
Silent Partners shows how experienced research subjects can become
real-not just symbolic-partners in research.
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