Coverart for item
The Resource Silent partners : human subjects and research ethics, Rebecca Dresser

Silent partners : human subjects and research ethics, Rebecca Dresser

Label
Silent partners : human subjects and research ethics
Title
Silent partners
Title remainder
human subjects and research ethics
Statement of responsibility
Rebecca Dresser
Creator
Author
Subject
Language
eng
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. 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
Cataloging source
NLM
http://library.link/vocab/creatorName
Dresser, Rebecca
Dewey number
174.2/8
Index
index present
LC call number
R853.H8
LC item number
D74 2017
Literary form
non fiction
Nature of contents
bibliography
http://library.link/vocab/subjectName
  • Human experimentation in medicine
  • Research
  • Medical ethics
  • Human experimentation in medicine
Label
Silent partners : human subjects and research ethics, Rebecca Dresser
Instantiates
Publication
Copyright
Bibliography note
Includes bibliographical references and index
Carrier category
volume
Carrier category code
  • nc
Carrier MARC source
rdacarrier
Content category
text
Content type code
  • txt
Content type MARC source
rdacontent
Contents
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
Control code
ocn944956464
Dimensions
22 cm
Extent
xvii, 302 pages
Isbn
9780190459277
Lccn
2016012145
Media category
unmediated
Media MARC source
rdamedia
Media type code
  • n
System control number
(OCoLC)944956464
Label
Silent partners : human subjects and research ethics, Rebecca Dresser
Publication
Copyright
Bibliography note
Includes bibliographical references and index
Carrier category
volume
Carrier category code
  • nc
Carrier MARC source
rdacarrier
Content category
text
Content type code
  • txt
Content type MARC source
rdacontent
Contents
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
Control code
ocn944956464
Dimensions
22 cm
Extent
xvii, 302 pages
Isbn
9780190459277
Lccn
2016012145
Media category
unmediated
Media MARC source
rdamedia
Media type code
  • n
System control number
(OCoLC)944956464

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