| References |
|
|
Appelbaum P,
Roth L,
Lidz C,
Benson P and
Winslade W
(1987)
False hopes and best data: consent to research and the therapeutic misconception.
Hastings Center Report
2:
20–24.
|
|
|
Bamberg M and
Budwig N
(1992)
Therapeutic misconceptions: when the voices of caring and research are misconstrued as the voice of curing.
Ethics and Behaviour
2:
165–184.
|
|
|
Bergler J,
Pennington A,
Metcalf M and
Freis E
(1980)
Informed consent: how much does the patient understand?
Clinical Pharmacology and Therapeutics
27:
435–440.
|
|
|
Bevan EG,
Chee LC,
McGhee SM and
McInnes GT
(1993)
Patients attitudes to participation in clinical trials.
British Journal of Clinical Pharmacology
35:
204–207.
|
|
|
Bigorra J and
Baños J
(1990)
Weight of financial reward in the decision by medical students and experienced healthy volunteers to participate in clinical trials.
European Journal of Clinical Pharmacology
38:
443–446.
|
|
|
Burton B
(2002)
Proposed genetic database on Tongans opposed.
BMJ
324:
443.
|
|
|
Cassileth B,
Zupkiss R,
Sutton-Smith K and
March V
(1980)
Informed consent – why are its goals imperfectly realized?
New England Journal of Medicine
302:
896–900.
|
|
|
Corrigan OP
(2003)
Empty ethics: the problem with informed consent.
Sociology of Health and Illness
25:
768–792.
|
|
|
book
Corrigan OP
(2005)
"Morality, risk and informed consent in clinical drug trials".
In: Redclift N (ed.)
Contesting Moralities: Science, Identity, Conflict.
London: UCL Press.
|
|
|
book
Council for International Organizations of the Medical Sciences and the World Health Organization (CIOMS/WHO)
(1993)
International Ethical Guidelines for Biomedical Research Involving Human Subjects.
Geneva: CIOMS.
|
|
|
Dixon-Woods M,
Ashcroft RE,
Jackson CJ et al.
(2007)
Beyond “misunderstanding”: written information and decisions about taking part in a genetic epidemiology study.
Social Science & Medicine
65:
2212–2222.
|
|
|
Donovan J,
Mills N,
Smith M et al.
(2002)
Quality improvement report: improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study * Commentary: presenting unbiased information to patients can be difficult.
BMJ
325:
766–770.
|
|
|
book
Dresser R
(2001)
When Science Offers Salvation: Patient Advocacy and Research Ethics.
Oxford: Oxford University Press.
|
|
|
Dunn L and
Jeste D
(2003)
Problem areas in the understanding of informed consent for research: study of middle-aged and older patients with psychotic disorders.
Psychopharmacology
171:
81–85.
|
|
|
Edwards SJL,
Lilford RJ and
Hewison J
(1998)
The ethics of randomised controlled trials from the perspectives of patients, the public, and healthcare professionals.
BMJ
317:
1209–1212.
|
|
|
book
Epstein S
(1996)
Impure Science.
London: University of California Press.
|
|
|
Estey A,
Wilkin G and
Dossetor J
(1994)
Are research subjects able to retain the information they are given during the consent process?
Health Law Review
3:
37–41.
|
|
|
Featherstone K and
Donovan J
(1998)
Random allocation or allocation at random? Patients’ perspectives of participation in a randomised controlled trial.
BMJ
317:
1177–1180.
|
|
|
Freedman B
(1987)
Equipoise and the ethics of clinical research.
New England Journal of Medicine
317:
141–145.
|
|
|
Glass KC and
Kaufert J
(2007)
Research ethics review and aboriginal community values: can the two be reconciled?
Journal of Empirical Research on Human Research Ethics
2:
25–40.
|
|
|
book
Haimes E and
Wong-Barr M
(2004)
"Levels and styles of participation in genetic databases: a case study of the North Cumbria Community Genetics Project".
In: Tutton R and
Corrigan OP (eds)
Genetic Databases: Socio-ethical Issues in the Collection and Use of DNA.
London: Routledge.
|
|
|
Hassar M and
Weintraub M
(1976)
Uniformed consent and the wealthy volunteer: an analysis of patient volunteers in a clinical trial of a new anti-inflammatory drug.
Clinical Pharmacology and Therapeutics
29:
379–386.
|
|
|
Hayden C
(2007)
Taking as giving: bioscience, exchange and the politics of benefit sharing.
Social Studies of Science
37:
729–758.
|
|
|
Hoeyer K
(2003)
Science is really needed – thats all I know: informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden.
New Genetics and Society
22:
229–244.
|
|
|
Meropol NJ,
Weinfurt KP,
Burnett CB et al.
(2003)
Perceptions of patients and physicians regarding phase I cancer clinical trials: implications for physician-patient communication.
Journal of Clinical Oncology
21:
2589–2596.
|
|
|
Miller PB and
Weijer C
(2006)
Trust based obligations of the state and physician-researchers to patient-subjects.
Journal of Medical Ethics
32:
542–547.
|
|
|
Moodley K,
Pather M and
Myer L
(2005)
Informed consent and participant perceptions of influenza vaccine trials in South Africa.
Journal of Medical Ethics
31:
727–732.
|
|
|
News Feature
(2006)
Will volunteers still want to take part in research after the TGN1412 trial?
The Pharmaceutical Journal
277:
387–388.
|
|
|
Novas C
(2006)
The political economy of hope: patients organizations, science and biovalue.
Bioethics
1:
289–345.
|
|
|
book
O'Neill O
(2002)
Autonomy and Trust in Bioethics.
Cambridge: Cambridge University Press.
|
|
|
Rabeharisoa V and
Callon M
(1998)
The participation of patients in the process of production of knowledge: the case of the French Muscular Dystrophies Association.
Sciences Sociales et Santé
16:
41–65.
|
|
|
Reardon J
(2001)
The Human Genome Diversity Project: a case study in coproduction.
Social Studies of Science
31:
357–388.
|
|
|
Ross S,
Grant A,
Counsell C et al.
(1999)
Barriers to participation in randomised controlled trials – literature summary and annotated bibliography.
Journal of Clinical Epidemiology
52:
1143–1156.
|
|
|
Schutta KM and
Burnett CB
(2000)
Factors that influence a patient's decision to participate in a phase I cancer clinical trial.
Oncology Nursing Forum
27:
1435–1438.
|
|
|
Snowdon C,
Garcia J and
Elbourne D
(1997)
Making sense of randomization; responses of parents of critically ill babies to random allocation of treatment in a clinical trial.
Social Science & Medicine
45:
1337–1355.
|
|
|
Sugarman J,
McCrory DC,
Powell D et al.
(1999)
Empirical research on informed consent: an annotated bibliography.
A Hastings Center Report (Special suppl.)
29(1):
S1–S42.
|
|
|
Taylor KM
(1992)
Integrating conflicting professional roles: physician participation in randomized clinical trials.
Social Science & Medicine
35:
217–224.
|
|
|
Weijer C,
Shapiro SH,
Glass KC and
Enkin MW
(2000)
For and against: clinical equipoise and not the uncertainty principle is the moral underpinning of the randomised controlled trial FOR AGAINST.
BMJ
321:
756–758.
|
|
|
Weinstein M
(2001)
A public culture for guinea pigs: US human research subjects after the Tuskegee study.
Science as Culture
10:
195–223.
|
|
|
book
Williams E,
Goodenough T,
Kent J and
Ashcroft R
(2004)
"Children's participation in genetics epidemiology: consent and control".
In:
Genetic Databases: Socio-ethical Issues in the Collection and Use of DNA.
London: Routledge.
|
|
|
book
World Medical Association (WMA)
(2004)
World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects.
Ferney-le-Voltaire, France: World Medical Association.
|
| Further Reading |
|
|
book
Beauchamp TL and
Childress JF
(1989)
Principles of Biomedical Ethics.
Belmont: Wadsworth Publishing Company.
|
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book
Beecher H
(1970)
Research and the Individual Human Studies.
Boston: Little Brown.
|
|
|
book
Corrigan OP,
McMillan J,
Liddell K,
Richards M and
Weijer C
(2008)
The Limits of Consent: A Socio-ethical Approach to Human Subject Research in Medicine.
Oxford: Oxford University Press.
|
|
|
book
Doyal L and
Tobias J
(2001)
Informed Consent in Medical Research.
London: BMJ Books.
|
|
|
Fox R
(1996)
Experiment perilous: forty-five years as a participant observer of patient oriented clinical research.
Perspectives in Biology and Medicine
39:
202–226.
|
|
|
book
Gray BH
(1975)
Human Subjects in Medical Experimentation.
New York: Wiley.
|
|
|
Knoppers BM and
Chadwick R
(2006)
Human genetic research: emerging trends in ethics.
Focus
4:
416–422.
|
|
|
book
Pappworth M
(1967)
Human Guinea Pigs.
Middlesex, England: Pelican.
|
|
|
book
Vanderpool HY
(1996)
The Ethics of Research Involving Human Subjects.
Frederick, MD: University Publishing Group.
|
|
|
Weijer C
(2000)
The ethical analysis of risk.
Journal of Law, Medicine & Ethics
28:
344–361.
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