Melbourne Law School - Research Publications

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End date: 2019 × Author: Kaye, Jane × Author: Prictor, Megan × Start date: 2016 ×

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    Trends and Challenges in Biobanking
    Kaye, J ; Bell, J ; Prictor, M ; Munsie, M ; Freckelton, I ; Petersen, K (Federation Press, 2017)
    The last twenty years have seen the emergence of the phenomena of biobanks, which are now regarded as essential research infrastructure in most countries around the world. However, the very nature of biobanks, as long-term repositories of sample and data that are used for many different research purposes continues to challenge many of the legal requirements for medical research, both in the UK and Australia. This chapter will provide an overview of biobanking and discuss some of the legal challenges that these activities raise by discussing and comparing the UK and Australian legal landscapes.
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    Consent for Data Processing under the General Data Protection Regulation: Could ‘Dynamic Consent’ be a Useful Tool for Researchers?
    Prictor, M ; Teare, H ; Bell, J ; Taylor, M ; Kaye, J (Henry Stewart Publishing, 2019)
    The General Data Protection Regulation (GDPR) sets the bar high for consent for the processing of personal data. In the UK, researchers have been directed to rely on legal bases other than consent for processing personal data for research purposes. Informed consent, nonetheless, and despite certain shortcomings, holds a central position in ethical research practice, as well as at common law, and in a range of other legislation dealing with research involving humans. This paper evaluates the place of informed consent in research following the GDPR’s implementation, arguing that a fresh approach to consent — specifically the concept known as ‘dynamic consent’ — could provide a way for researchers to meet the new European regulatory requirements for data processing while adhering to the highest ethical standards for research conduct. It analyses dynamic consent according to specific GDPR requirements and reflects on practical examples that could inform future implementation of the approach, while remaining aware of the need for further empirical research.
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    Dynamic Consent and Biobanking: A Means of Fostering Sustainability
    Kaye, J ; Prictor, M ; Minssen, T ; Herrmann, JR ; Schovsbo, J (Edward Elgar Publishing Ltd, 2019)
    Biobanks are rich repositories of biological materials (such as DNA) and other health and demographic data, often collected over a long period, that can be used for a variety of research purposes to improve the health of individuals and populations. It is important that the value of biobanks is maximized, but at this point in time there are a number of challenges to achieving this. There is continued debate over the most appropriate mode of gaining consent from people who contribute tissue samples and data to biobanks, which will uphold high ethical standards and enable autonomous decisionmaking.
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    Equitable Participation in Biobanks: The Risks and Benefits of a “Dynamic Consent” Approach
    Prictor, M ; Teare, H ; Kaye, J (Frontiers Media, 2018)
    Participation in biobanks tends to favor certain groups—white, middle-class, more highly-educated—often to the exclusion of others, such as indigenous people, the socially-disadvantaged and the culturally and linguistically diverse. Barriers to participation, which include age, location, cultural sensitivities around human tissue, and issues of literacy and language, can influence the diversity of samples found in biobanks. This has implications for the generalizability of research findings from biobanks being able to be translated into the clinic. Dynamic Consent, which is a digital decision-support tool, could improve participants' recruitment to, and engagement with, biobanks over time and help to overcome some of the barriers to participation. However, there are also risks that it may deepen the “digital divide” by favoring those with knowledge and access to digital technologies, with the potential to decrease participant engagement in research. When applying a Dynamic Consent approach in biobanking, researchers should give particular attention to adaptations that can improve participant inclusivity, and evaluate the tool empirically, with a focus on equity-relevant outcome measures. This may help biobanks to fulfill their promise of enabling translational research that is relevant to all.
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    Who Owns Your DNA?
    Greenbaum, D ; Gerstein, M (Elsevier BV, 2016-04)
    When you’re clipping your nails or having a haircut, do you think about who owns those samples of your genetic material? Perhaps you think it doesn’t really matter, or that because it comes from your body, you own it. In fact, legally, the answer is far more complex.