A Neuroethics Framework for the Australian Brain Initiative

Carter, Adrian; Richards, Linda J.; Apthorp, Deborah; Azghadi, Mostafa Rahimi; Badcock, David R.; Balleine, Bernard W.; Bekkers, John M.; Berk, Michael; Bourne, James A.; Bradley, Andrew P.; Breakspear, Michael; Brichta, Alan M.; Carter, Olivia; Castles, Anne; Chakli, Khaled; Cohen‐Woods, Sarah; Conn, Simon J.; Cornish, Jennifer L.; Cornish, Kim; Zubicaray, Greig I. de; Egan, Gary F.; Enticott, Peter G.; Fitzgibbon, Bernadette M.; Forlini, Cynthia; Fornito, Alex; Griffiths, Lyn R.; Gullifer, Judith; Hall, Wayne; Halliday, Glenda M.; Hannan, Anthony J; Harrer, S.; Harvey, Alan R.; Hatherly, Chris; Hickie, Ian B.; Kennett, Jeanette; Kiernan, Matthew C.; Kilpatrick, Trevor J.; Kiral-Kornek, Isabell; Korgaonkar, Mayuresh S.; Lawrence, Andrew J.; Leventer, Rick; Levy, Neil; Licinio, Júlio; Lovell, Nigel H.; Mackellar, Geoff; Malcolm, Lynne; Mason, Alice; Mattingley, Jason B.; Medland, Sarah E.; Michie, Patricia T.; Nithianantharajah, Jess; Parker, John; Payne, Jonathan M.; Poole‐Warren, Laura; Sah, Pankaj; Sarnyai, Zoltán; Schofield, Peter R.; Shimoni, Olga; Shum, David; Silk, Tim; Slee, Mark; Smith, Ashleigh E.; Soulis, T; Sriram, Sharath; Stuart, Gregory J; Tapson, Jonathan; Thompson, Matthew B.; Schaik, André van; Vincent, Nicole A.; Vissel, Bryce; Waters, Allison; Other, A N

doi:10.1016/j.neuron.2019.12.019

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confidence: 99%

“…The Human Brain Project 14 develops a research infrastructure for investigating brain biology and regularly interacts with stakeholders through the organization of stakeholder boards and citizen meetings to discuss the ethical, social and philosophical implications of neurological research. 15 The Australian Brain Initiative, an alliance of public and private actors in brain sciences, 16 engages researchers, healthcare professionals, policymakers, industry representatives and patient advocates in the development of national guidelines for ethically and socially robust neuroinnovation. 16 Principles and guidelines for Patient and Public Involvement have been developed, thereby providing researchers with concrete guidance on engaging different groups with research into neurodegenerative and brain diseases.…”

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confidence: 99%

“…15 The Australian Brain Initiative, an alliance of public and private actors in brain sciences, 16 engages researchers, healthcare professionals, policymakers, industry representatives and patient advocates in the development of national guidelines for ethically and socially robust neuroinnovation. 16 Principles and guidelines for Patient and Public Involvement have been developed, thereby providing researchers with concrete guidance on engaging different groups with research into neurodegenerative and brain diseases. 17,18 The guidelines suggest avenues for identifying relevant individuals and stakeholder organizations to engage in research, define their roles in the different phases of research projects and establish working agreements.…”

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confidence: 99%

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Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium

Budin‐Ljøsne

Friedman

Baaré

et al. 2023

Health Expectations

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Introduction Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the translation of study findings to policy. The Lifebrain consortium investigated risk and protective factors influencing brain health using cognition, lifestyle and imaging data from European cohorts. Stakeholder activities of Lifebrain—organized in a separate work package—included organizing stakeholder events, investigating public perceptions of brain health and dissemination. Here, we describe the experiences of researchers and stakeholders regarding stakeholder engagement in the Lifebrain project. Methods Stakeholder engagement in Lifebrain was evaluated through surveys among researchers and stakeholders and stakeholders' feedback at stakeholder events through evaluation forms. Survey data were analysed using a simple content analysis approach, and results from evaluation forms were summarized after reviewing the frequency of responses. Results Consortium researchers and stakeholders experienced the engagement activities as meaningful and relevant. Researchers highlighted that it made the research and research processes more visible and contributed to new networks, optimized data collection on brain health perceptions and the production of papers and provided insights into stakeholder views. Stakeholders found research activities conducted in the stakeholder engagement work package to be within their field of interest and research results relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and challenges in communicating complex scientific issues in lay language and maintaining relationships with stakeholders over time. Stakeholders identified barriers such as lack of budget, limited resources in their organization, time constraints and insufficient communication between researchers and stakeholders. Conclusion Stakeholder engagement in basic brain research can greatly benefit researchers and stakeholders alike. Its success is conditional on dedicated human and financial resources, clear communication, transparent mutual expectations and clear roles and responsibilities. Public Contribution Patient organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration.

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Section: Introductionmentioning

confidence: 99%

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confidence: 99%

mentioning

confidence: 99%

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Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium

Budin‐Ljøsne

Friedman

Baaré

et al. 2023

Health Expectations

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Thinking on the Brain Project and Its Ethical Issues from the Perspective of Engineering

Li¹

2020

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An XYZ-axis Matrix Approach for the Integration of Neuroscience and Neuroethics

et al. 2023

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Although neuroethics as an independent discipline has a relatively short history, ethical issues arising out of a clinical and scientific investigation of the human brain and its function have been studied for a long time from human rights and biomedical ethics point of view. In the 1930s, substantial efforts were made to examine and address ethical issues concerning practices in the fields of clinical psychiatry and neurosurgery, such as frontal lobotomy or forced hospitalization of patients with mental disorders, which were highly publicized abuses in the United States and Europe [1-3]. These efforts greatly improved the protection of patients' rights and led to the development of core ethical principles in human subject research and clinical care.Neuroscience has also had its unique place and meaning in ethics and philosophy. For example, in Western philosophy, the ability to make an independent and rational decision lies at the core of what makes us human [4]. Free will, a modern concept of individual independence and autonomy, is the capacity to decide and act upon one' s motives, values, and desires through careful deliberation. It also forms the basis of introspective thinking, a process that examines and reflects on one' s own thoughts and feelings. The fact that

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A Neuroethics Framework for the Australian Brain Initiative

Abstract: In the original publication of this NeuroView, the member list for the Australian Brain Alliance was omitted. This has now been corrected online. Neuron apologizes for the error.

Cited by 3 publications

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Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium

Stakeholder engagement in European brain research: Experiences of the Lifebrain consortium

Thinking on the Brain Project and Its Ethical Issues from the Perspective of Engineering

An XYZ-axis Matrix Approach for the Integration of Neuroscience and Neuroethics

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