Literature DB >> 29532387

Moving Forward on Consent Practices in Australia.

Rebekah E McWhirter1,2, Lisa Eckstein3.   

Abstract

Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the extent to which such forms-particularly given their frequent lengthiness and complexity-provide participants with the tools and knowledge necessary for autonomous decision-making. Concerns are especially pronounced for certain participant groups, such as persons with low literacy and Indigenous persons. Multimedia strategies have the potential to usefully supplement current consent practices in Australia; however, information is needed about the need for supplementary consent practices, along with drivers for and barriers against adoption. This study initiates the required evidence base through an audit of informed consent practices for medical research in the Australian state of Tasmania to assess the need for, and current uptake of, supplementary consent strategies. Drivers for and barriers against adoption of multimedia consent practices were explored in detail through interviews with key stakeholders, including researchers, HREC chairs and members, and research participants, including Indigenous participants.

Entities:  

Keywords:  Consent apps; Informed consent; Multimedia consent; Research ethics

Mesh:

Year:  2018        PMID: 29532387     DOI: 10.1007/s11673-018-9843-z

Source DB:  PubMed          Journal:  J Bioeth Inq        ISSN: 1176-7529            Impact factor:   1.352


  27 in total

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Journal:  JAMA       Date:  2000 May 24-31       Impact factor: 56.272

Review 2.  Improving the informed consent process for research subjects with low literacy: a systematic review.

Authors:  Leonardo Tamariz; Ana Palacio; Mauricio Robert; Erin N Marcus
Journal:  J Gen Intern Med       Date:  2012-07-11       Impact factor: 5.128

3.  Satisfaction with the decision to participate in cancer clinical trials is high, but understanding is a problem.

Authors:  M Jefford; L Mileshkin; J Matthews; H Raunow; C O'Kane; T Cavicchiolo; H Brasier; M Anderson; J Reynolds
Journal:  Support Care Cancer       Date:  2010-02-23       Impact factor: 3.603

4.  The length of consent documents in oncological trials is doubled in twenty years.

Authors:  O Berger; B H Grønberg; K Sand; S Kaasa; J H Loge
Journal:  Ann Oncol       Date:  2008-10-15       Impact factor: 32.976

Review 5.  Enduring and emerging challenges of informed consent.

Authors:  Christine Grady
Journal:  N Engl J Med       Date:  2015-02-26       Impact factor: 91.245

6.  Quality of informed consent in cancer clinical trials: a cross-sectional survey.

Authors:  S Joffe; E F Cook; P D Cleary; J W Clark; J C Weeks
Journal:  Lancet       Date:  2001-11-24       Impact factor: 79.321

7.  Consent form readability and educational levels of potential participants in mental health research.

Authors:  Paul P Christopher; Mary Ellen Foti; Kristen Roy-Bujnowski; Paul S Appelbaum
Journal:  Psychiatr Serv       Date:  2007-02       Impact factor: 3.084

8.  An analysis of the readability of patient information and consent forms used in research studies in anaesthesia in Australia and New Zealand.

Authors:  H E Taylor; D E P Bramley
Journal:  Anaesth Intensive Care       Date:  2012-11       Impact factor: 1.669

9.  Interactive multimedia consent for biobanking: a randomized trial.

Authors:  Christian M Simon; David W Klein; Helen A Schartz
Journal:  Genet Med       Date:  2015-04-02       Impact factor: 8.822

10.  Multimedia Informed Consent Tool for a Low Literacy African Research Population: Development and Pilot-Testing.

Authors:  Muhammed Olanrewaju Afolabi; Kalifa Bojang; Umberto D'Alessandro; Egeruan Babatunde Imoukhuede; Raffaella M Ravinetto; Heidi Jane Larson; Nuala McGrath; Daniel Chandramohan
Journal:  J Clin Res Bioeth       Date:  2014-04-05
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  4 in total

1.  Bioethics and the Freedom Road. The JBI Community and the Change We Want To See.

Authors:  Michael A Ashby; Bronwen Morrell
Journal:  J Bioeth Inq       Date:  2018-06       Impact factor: 1.352

2.  Shortened consent forms for genome-wide sequencing: Parent and provider perspectives.

Authors:  Emma C Hitchcock; Causes Study; Alison M Elliott
Journal:  Mol Genet Genomic Med       Date:  2020-05-08       Impact factor: 2.183

3.  An enhanced participant information leaflet and multimedia intervention to improve the quality of informed consent to a randomised clinical trial enrolling people living with HIV and obesity: a protocol for a Study Within A Trial (SWAT).

Authors:  Lydia O'Sullivan; Stefano Savinelli; Stephen O'Hare; Sinéad Holden; Ciara McHugh; Patrick Mallon; Peter Doran
Journal:  Trials       Date:  2022-01-17       Impact factor: 2.279

4.  Harmonising the human biobanking consent process: an Irish experience.

Authors:  Lydia O'Sullivan; Tomás P Carroll; Niamh Clarke; Sarah Cooper; Ann Cullen; Laura Gorman; Billy McCann; Blánaid Mee; Nicola Miller; Verena Murphy; Máiréad Murray; Jackie O'Leary; Sharon O'Toole; Emma Snapes; Suzanne Bracken
Journal:  HRB Open Res       Date:  2021-09-15
  4 in total

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