Subject perspectives : the missing element in research ethics -- Personal knowledge and study participation -- The everyday ethics of human research -- The hidden world of subjects : rule-breaking in clinical trials -- Participants as partners in genetic research -- Terminally ill patients and the right to try experimental drugs -- Embedded ethics in developing country research -- Research subjects as literary subjects -- How to hear subjects.
Summary:
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.
This resource is supported by the Institute of Museum and Library Services under the provisions of the Library Services and Technology Act as administered by State Library of Iowa.