Literature DB >> 16269568

Keep people informed or leave them alone? A suggested tool for identifying research participants who rightly want only limited information.

S Eriksson1, G Helgesson.   

Abstract

People taking part in research vary in the extent to which they understand information concerning their participation. Since they may choose to limit the time and effort spent on such information, lack of understanding is not necessarily an ethical problem. Researchers who notice a lack of understanding are in the quandary of not knowing whether this is due to flaws in the information process or to participants' deliberate choices. We argue that the two explanations call for different responses.A tool for identifying those research participants who want limited information is presented. This consists of a restricted number of questions about trust in and appraisal of research, priority of time and privacy, and perception of a duty to participate. It is argued that an important group of participants who purposely lack understanding of the study can be identified with this tool. Some limitations to this approach are also discussed.

Entities:  

Keywords:  Biomedical and Behavioral Research; Empirical Approach

Mesh:

Year:  2005        PMID: 16269568      PMCID: PMC1734038          DOI: 10.1136/jme.2004.009753

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  15 in total

1.  Readability standards for informed-consent forms as compared with actual readability.

Authors:  Michael K Paasche-Orlow; Holly A Taylor; Frederick L Brancati
Journal:  N Engl J Med       Date:  2003-02-20       Impact factor: 91.245

2.  Therapeutic misconception and the appreciation of risks in clinical trials.

Authors:  Charles W Lidz; Paul S Appelbaum; Thomas Grisso; Michelle Renaud
Journal:  Soc Sci Med       Date:  2004-05       Impact factor: 4.634

3.  Informed consent in medical research. Patients may not understand enough to give their informed consent.

Authors:  C Montgomery; A Lydon; K Lloyd
Journal:  BMJ       Date:  1997-05-17

4.  Informed consent in medical research. Journals should not publish research to which patients have not given fully informed consent--with three exceptions.

Authors:  L Doyal
Journal:  BMJ       Date:  1997-04-12

5.  Quality of informed consent: a new measure of understanding among research subjects.

Authors:  S Joffe; E F Cook; P D Cleary; J W Clark; J C Weeks
Journal:  J Natl Cancer Inst       Date:  2001-01-17       Impact factor: 13.506

Review 6.  Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Implications for cancer screening and management.

Authors:  S M Miller
Journal:  Cancer       Date:  1995-07-15       Impact factor: 6.860

7.  Information and informed consent in a longitudinal screening involving children: a questionnaire survey.

Authors:  Ulrica Gustafsson Stolt; Gert Helgesson; Per-Erik Liss; Tommy Svensson; Johnny Ludvigsson
Journal:  Eur J Hum Genet       Date:  2005-03       Impact factor: 4.246

8.  Making research consent forms informative and understandable: the experience of the Indian Health Service.

Authors:  W L Freeman
Journal:  Camb Q Healthc Ethics       Date:  1994       Impact factor: 1.284

9.  The use and interpretation of commercial APC gene testing for familial adenomatous polyposis.

Authors:  F M Giardiello; J D Brensinger; G M Petersen; M C Luce; L M Hylind; J A Bacon; S V Booker; R D Parker; S R Hamilton
Journal:  N Engl J Med       Date:  1997-03-20       Impact factor: 91.245

10.  Developing ethical strategies to assist oncologists in seeking informed consent to cancer clinical trials.

Authors:  R F Brown; P N Butow; D G Butt; A R Moore; M H N Tattersall
Journal:  Soc Sci Med       Date:  2004-01       Impact factor: 4.634

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