-
4
-
-
40649086736
-
Autonomy and negatively informed consent
-
Kihlbom U. Autonomy and negatively informed consent. Journal of Medical Ethics 2008;34:146-9;
-
(2008)
Journal of Medical Ethics
, vol.34
, pp. 146-149
-
-
Kihlbom, U.1
-
6
-
-
79953020493
-
-
See note 2, Beauchamp, Childress 2009 and Kihlbom 2008
-
See note 2, Beauchamp, Childress 2009 and Kihlbom 2008.
-
-
-
-
7
-
-
0042707191
-
Consent for continuing research participation: What is it and when should it be obtained?
-
Wendler D, Rackoff J. Consent for continuing research participation: What is it and when should it be obtained? IRB: Ethics & Human Research 2002;24(3):1-6;
-
(2002)
IRB: Ethics & Human Research
, vol.24
, Issue.3
, pp. 1-6
-
-
Wendler, D.1
Rackoff, J.2
-
8
-
-
79953023150
-
-
see note 2, Kihlbom 2008
-
see note 2, Kihlbom 2008.
-
-
-
-
9
-
-
29244452652
-
The right to withdraw consent to research on biobank samples
-
DOI 10.1007/s11019-005-0397-6
-
Helgesson G, Johnsson L. The right to withdraw consent to research on biobank samples. Medicine, Health Care and Philosophy 2005;8:315-21; (Pubitemid 41829749)
-
(2005)
Medicine, Healthcare and Philosophy
, vol.8
, Issue.3
, pp. 315-321
-
-
Helgesson, G.1
Johnsson, L.2
-
10
-
-
0004177253
-
-
World Medical Association, The 59th General Assembly, Seoul, October
-
World Medical Association. Declaration of Helsinki. The 59th General Assembly, Seoul, October 2008;
-
(2008)
Declaration of Helsinki
-
-
-
11
-
-
79953007696
-
-
see note 2, Beauchamp, Childress 2009
-
see note 2, Beauchamp, Childress 2009;
-
-
-
-
12
-
-
79952999931
-
-
see note 4, Wendler, Rackoff 2002
-
see note 4, Wendler, Rackoff 2002.
-
-
-
-
13
-
-
0031085862
-
Decoding informed consent: Insights from women regarding cancer susceptibility testing
-
Geller G, Strauss M, Bernhard BA, Holtzman NA. Decoding informed consent: Insights from women regarding cancer susceptibility testing. Hastings Center Report 1997;27(2):28-33;
-
(1997)
Hastings Center Report
, vol.27
, Issue.2
, pp. 28-33
-
-
Geller, G.1
Strauss, M.2
Bernhard, B.A.3
Holtzman, N.A.4
-
14
-
-
12444251685
-
The decision dynamics of clinical research; the context and process of informed consent
-
Kuczewski MG, Marshall P. The decision dynamics of clinical research; the context and process of informed consent. Medical Care 2002;40(Suppl): V45-54;
-
(2002)
Medical Care
, vol.40
, Issue.SUPPL.
-
-
Kuczewski, M.G.1
Marshall, P.2
-
15
-
-
28244436787
-
Informed consent process: A survey of subjects assesses strengths and weaknesses
-
Getz KA. Informed consent process: A survey of subjects assesses strengths and weaknesses. Applied Clinical Trials 2002;11:30-6;
-
(2002)
Applied Clinical Trials
, vol.11
, pp. 30-36
-
-
Getz, K.A.1
-
16
-
-
79953016428
-
-
see note 4, Wendler, Rackoff 2002
-
see note 4, Wendler, Rackoff 2002.
-
-
-
-
17
-
-
37749016694
-
Maintaining informed consent validity during lengthy research protocols
-
Prentice KJ, Appelbaum PS, Conley RR, Carpenter WT. Maintaining informed consent validity during lengthy research protocols. IRB: Ethics & Human Research 2007;29(6):1-6;
-
(2007)
IRB: Ethics & Human Research
, vol.29
, Issue.6
, pp. 1-6
-
-
Prentice, K.J.1
Appelbaum, P.S.2
Conley, R.R.3
Carpenter, W.T.4
-
18
-
-
79953010698
-
-
see note 4, Wendler, Rackoff 2002
-
see note 4, Wendler, Rackoff 2002;
-
-
-
-
19
-
-
79952999930
-
-
see note 6, Geller et al. 1997
-
see note 6, Geller et al. 1997.
-
-
-
-
20
-
-
79953005605
-
-
See note 4, Wendler, Rackoff 2002:5
-
See note 4, Wendler, Rackoff 2002:5.
-
-
-
-
21
-
-
79953006617
-
-
See note 4, Wendler, Rackoff 2002
-
See note 4, Wendler, Rackoff 2002;
-
-
-
-
22
-
-
79953000456
-
-
see note 6, Geller et al. 1997
-
see note 6, Geller et al. 1997.
-
-
-
-
23
-
-
28244461469
-
Keep people informed or leave them alone? A suggested tool for identifying research participants who rightly want only limited information
-
DOI 10.1136/jme.2004.009753
-
Eriksson S, Helgesson G. Keep people informed or leave them alone? A suggested tool for identifying research participants who rightly want only limited information. Journal of Medical Ethics 2005;31:674-78; (Pubitemid 41701041)
-
(2005)
Journal of Medical Ethics
, vol.31
, Issue.11
, pp. 674-678
-
-
Eriksson, S.1
Helgesson, G.2
-
24
-
-
79953018037
-
-
see note 4, Wendler, Rackoff 2002
-
see note 4, Wendler, Rackoff 2002.
-
-
-
-
25
-
-
79953005604
-
-
See note 4, Wendler, Rackoff 2002
-
See note 4, Wendler, Rackoff 2002.
-
-
-
-
26
-
-
79953018546
-
-
See note 4, Wendler, Rackoff 2002:4
-
See note 4, Wendler, Rackoff 2002:4.
-
-
-
-
27
-
-
79952996368
-
-
See note 4, Wendler, Rackoff 2002
-
See note 4, Wendler, Rackoff 2002.
-
-
-
-
28
-
-
79952997430
-
-
See note 4, Wendler, Rackoff 2002:4-5
-
See note 4, Wendler, Rackoff 2002:4-5.
-
-
-
-
29
-
-
79952994816
-
-
See note 4, Wendler, Rackoff 2002
-
See note 4, Wendler, Rackoff 2002.
-
-
-
-
30
-
-
79953011186
-
-
See note 4, Wendler, Rackoff 2002
-
See note 4, Wendler, Rackoff 2002.
-
-
-
-
31
-
-
79953020492
-
-
See note 7, Prentice et al. 2007:2
-
See note 7, Prentice et al. 2007:2.
-
-
-
-
32
-
-
79953008225
-
-
See note 7, Prentice et al. 2007:1
-
See note 7, Prentice et al. 2007:1.
-
-
-
-
33
-
-
79953010234
-
-
See note 10, Eriksson, Helgesson 2005
-
See note 10, Eriksson, Helgesson 2005.
-
-
-
-
34
-
-
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-
-
note
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The issue of whether or not to report research results back to research subjects is complicated. It seems reasonable in some kinds of studies and not so in others. We cannot discuss this in detail here, but suggest the following general principle: If research is conducted in a clinical setting, then participating patients will most likely perceive research as part of clinical procedures (which, in a sense, it is). In such situations, research results should be reported back if they can be expected to be relevant to the treatment and care of the patient. If research is not conducted in a clinical setting, as when research is carried out on previously collected biobank samples, then results should not be reported back. Exceptions to the latter principle should be considered if consequences otherwise would be dire to those concerned. In principle, research and treatment of patients are different activities and should be treated as such when research subjects could be expected to perceive the difference (the last condition is important for the sake of people's trust in both research and healthcare).
-
-
-
-
35
-
-
79953022092
-
-
See note 4, Wendler, Rackoff 2002
-
See note 4, Wendler, Rackoff 2002.
-
-
-
-
36
-
-
33747031390
-
Improving the quality of consent to randomised controlled trials by using continuous consent and clinician training in the consent process
-
DOI 10.1136/jme.2005.013722
-
Allmark P, Mason S. Improving the quality of consent to randomised controlled trials by using continuous consent and clinician training in the consent process. Journal of Medical Ethics 2006;32:439-43. (Pubitemid 44210076)
-
(2006)
Journal of Medical Ethics
, vol.32
, Issue.8
, pp. 439-443
-
-
Allmark, P.1
Mason, S.2
-
37
-
-
79953013867
-
-
See note 7, Prentice et al. 2007:2
-
See note 7, Prentice et al. 2007:2.
-
-
-
-
38
-
-
79953001995
-
-
See note 7, Prentice et al. 2007:3
-
See note 7, Prentice et al. 2007:3.
-
-
-
-
39
-
-
55249098201
-
Self-assessed understanding as a tool for evaluating consent: Reflections on a longitudinal study
-
Swartling U, Helgesson G. Self-assessed understanding as a tool for evaluating consent: Reflections on a longitudinal study. Journal of Medical Ethics 2008;34:557-62;
-
(2008)
Journal of Medical Ethics
, vol.34
, pp. 557-562
-
-
Swartling, U.1
Helgesson, G.2
-
40
-
-
79953023149
-
-
see note 10, Eriksson, Helgesson 2005
-
see note 10, Eriksson, Helgesson 2005.
-
-
-
-
41
-
-
23344435700
-
Variability in women's desire for information about mammography screening: Implications for informed consent
-
DOI 10.1097/00008469-200508000-00015
-
Chamot E, Charvet AI, Perneger TV. Variability in women's desire for information about mammography screening: Implications for informed consent. European Journal of Cancer Prevention 2005;14:413-8; (Pubitemid 41104951)
-
(2005)
European Journal of Cancer Prevention
, vol.14
, Issue.4
, pp. 413-418
-
-
Chamot, E.1
Charvet, A.I.2
Perneger, T.V.3
-
42
-
-
0037329215
-
Some limits of informed consent
-
DOI 10.1136/jme.29.1.4
-
O'Neill O. Some limits of informed consent. Journal of Medical Ethics 2003;29:4-7; (Pubitemid 36231456)
-
(2003)
Journal of Medical Ethics
, vol.29
, Issue.1
, pp. 4-7
-
-
O'Neill, O.1
-
43
-
-
79953020068
-
-
see note 10, Eriksson, Helgesson 2005
-
see note 10, Eriksson, Helgesson 2005;
-
-
-
-
44
-
-
79953022633
-
-
see note 25, Swartling, Helgesson 2008
-
see note 25, Swartling, Helgesson 2008.
-
-
-
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