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Moving Forward on Consent Practices in Australia

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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.

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Notes

  1. Section 4.1 of the National Statement identifies these groups as pregnant women and the human fetus; children and young people; people in dependent or unequal relationships; people highly dependent on medical care; people with a cognitive impairment, intellectual disability, or mental illness; people who may be involved in illegal activities; Aboriginal and Torres Strait Islanders; and people in other countries.

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Authors and Affiliations

  1. Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart, TAS, 7001, Australia

    Rebekah E. McWhirter

  2. Menzies Institute for Health Research, University of Tasmania, Hobart, TAS, 7000, Australia

    Rebekah E. McWhirter

  3. Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart, TAS, 7001, Australia

    Lisa Eckstein

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  1. Rebekah E. McWhirter
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  2. Lisa Eckstein
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Correspondence to Rebekah E. McWhirter.

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McWhirter, R.E., Eckstein, L. Moving Forward on Consent Practices in Australia. Bioethical Inquiry 15, 243–257 (2018). https://doi.org/10.1007/s11673-018-9843-z

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