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      Communicating the Results of Clinical Research to Participants: Attitudes, Practices, and Future Directions

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      Author(s): * ,
      Publication date (Electronic):
      Journal: PLoS Medicine
      Publisher: Public Library of Science

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          Abstract

          The authors discuss the available data on the effects of communicating aggregate and individual research results on participants, investigators, and the research enterprise.

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          Most cited references56

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          The emergence of an ethical duty to disclose genetic research results: international perspectives.

          Bartha Knoppers, Yann Joly, Jacques Simard … (2006)
          The last decade has witnessed the emergence of international ethics guidelines discussing the importance of disclosing global and also, in certain circumstances, individual genetic research results to participants. This discussion is all the more important considering the advent of pharmacogenomics and the increasing incidence of 'translational' genetic research in the post-genomic era. We surveyed both the literature and the ethical guidelines using selective keywords. We then analyzed our data using a qualitative method approach and singled out countries or policies that were representative of certain positions. From our findings, we conclude that at the international level, there now exists an ethical duty to return individual genetic research results subject to the existence of proof of validity, significance and benefit. Even where these criteria are met, the right of the research participant not to know also has to be taken into consideration. The existence of an ethical duty to return individual genetic research results begs several other questions: Who should have the responsibility of disclosing such results and when? To whom should the results be disclosed? How? Finally, will this ethical 'imperative' become a legally recognized duty as well?
          Article 0 comments Cited 65 times – based on 0 reviews     Review now
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            Disclosing individual results of clinical research: implications of respect for participants.

            David Shalowitz, Franklin Miller (2005)
            Article 0 comments Cited 60 times – based on 0 reviews     Review now
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              Psychological consequences of predictive genetic testing: a systematic review.

              Theresa Marteau, S Michie, M Broadstock (2000)
              The aim of this systematic literature review is to describe the psychological consequences of predictive genetic testing. Five databases were searched for studies using standardised outcome measures and statistical comparison of groups. Studies were selected and coded by two independent researchers. From 899 abstracts, 15 papers, describing 11 data sets, met the selection criteria for the review. The studies were of predictive genetic testing for Huntington's disease, hereditary breast and ovarian cancer, familial adenomatous polyposis and spinocerebellar ataxia. One involved children; the rest were of adults. None of the 15 papers reported increased distress (general and situational distress, anxiety and depression) in carriers or non-carriers at any point during the 12 months after testing. Both carriers and non-carriers showed decreased distress after testing; this was greater and more rapid amongst non-carriers. Test result (ie being a carrier or non-carrier) was rarely predictive of distress more than one month after testing (predictive in two of 14 analyses). Pre-test emotional state was predictive of subsequent distress in 14 of 27 analyses. There is a lack of informative studies in this field. The studies reviewed suggest that those undergoing predictive genetic testing do not experience adverse psychological consequences. However, the studies are of self-selected populations who have agreed to participate in psychological studies and have been followed up for no more than three years. Most research has been of testing for Huntington's Disease and included follow-up of no more than one year. The results suggest that testing protocols should include a pre-test assessment of emotional state so that post-test counselling can be targeted at those more distressed before testing. None of the studies experimentally manipulated the amount or type of counselling provided. The relationship between counselling and emotional outcome is therefore unclear and awaits empirical study.
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                Author and article information

                Journal
                Journal ID (nlm-ta): PLoS Med
                Journal ID (publisher-id): pmed
                Journal ID (publisher-id): plme
                Journal ID (pmc): plosmed
                Title: PLoS Medicine
                Publisher: Public Library of Science (San Francisco, USA )
                ISSN (Print): 1549-1277
                ISSN (Electronic): 1549-1676
                Publication date (Print): May 2008
                Publication date (Electronic): 13 May 2008
                Volume: 5
                Issue: 5
                Electronic Location Identifier: e91
                Author notes
                * To whom correspondence should be addressed. E-mail: dshalowi@ 123456med.umich.edu
                Article
                Publisher ID: 07-PLME-GG-1895R3
                DOI: 10.1371/journal.pmed.0050091
                PMC ID: 2375946
                PubMed ID: 18479180
                SO-VID: cefeaa46-f309-43fa-b918-7b84b2b71a9c
                Copyright © This is an open-access article distributed under the terms of the Creative Commons Public Domain declaration, which stipulates that, once placed in the public domain, this work may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose.
                History
                Page count
                Pages: 7
                Categories
                Subject: Guidelines and Guidance
                Subject: Non-Clinical Medicine
                Subject: Non-Clinical Medicine
                Subject: Non-Clinical Medicine
                Subject: Non-Clinical Medicine
                Subject: Science Policy
                Subject: Patients
                Subject: Communication in Health Care
                Subject: Clinical Trials
                Subject: Research Methods
                Subject: Academic Medicine
                Custom metadata
                citation Shalowitz DI, Miller FG (2008) Communicating the results of clinical research to participants: Attitudes, practices, and future directions. PLoS Med 5(5): e91. doi: 10.1371/journal.pmed.0050091

                ScienceOpen disciplines: Medicine
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                ScienceOpen disciplines: Medicine

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