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Ethics and Governance

Ethical conduct of science, good governance of data, and accelerated translation to the clinic are key to high-calibre open neuroscience.  Everyday practitioners of science must be sensitized to a range of ethical considerations in their research, some having especially to do with open data-sharing.

 

The following lessons introduce a number of these topics and end with concrete guidance for participant consent and de-identification of data.

Course Features
Research Ethics and Society
Open Brain Consent
CONP Ethics Toolkit
CONP Ethics and Data Governance Framework
Lessons of this Course
1
1
Duration:
38:49

Neuroethics has been described as containing at least two components - the neuroscience of ethics and the ethics of neuroscience. The first involves neuroscientific theories, research, and neuro-imaging focused on how the brain arrives at moral decisions and actions, which challenge existing descriptive theories of how humans develop moral thinking and make ethical decisions. The second, ethics of neuroscience, involves applying normative theories about what is right, good and fair to ethical questions raised by neuroscientific research and new technologies, such as how to balance the public benefit of “big data” neuroscience while protecting individual privacy and norms of informed consent.

2
1
Duration:
9:31

This video provides an overview of the ethical issues that have arisen as a result of the application of advancements in neurotechnology. The video is intended to provide those new to neuroethics with an overview of the issues addressed by the field.  If you have you ever thought about the ethical questions raised by technology that could peek into a human mind in an advanced and intimate way, then this is the video for you.

3
4
Duration:
50:15
Speaker:

In the face of perceived public concerns about technological innovations, leading national and international bodies increasingly argue that there must be ‘dialogue' between policy makers, scientific researchers, civil society organizations and members of the public, to shape the pathways of technology development in a way that meets societal needs and gains public trust. This is not new, of course, and such concerns go back at least to the debates over the development of nuclear technologies and campaigns for social responsibility in science. Major funding bodies in the UK, Europe and elsewhere are now addressing this issue by insisting on Responsible Research and Innovation (RRI) in the development of emerging technology. Biotechnologies such as synthetic biology and neurotechnologies have become a particular focus of RRI, partly because of the belief that these are risky technologies involving tinkering with the very building blocks of life, and perhaps even with human nature. With my fellow researchers, I have been involved in trying to develop Responsible Research and Innovation in these technologies for several years.

4
4
Duration:
55:19

This lecture covers how neuroscience could potentially influence the legal/justice system and the ethical implications therein. The lecture was part of the Neuro Day Workshop held by the NeuroSchool of Aix Marseille University.

5
5
Duration:
13:11

This lecture provides guidance on the ethical considerations the clinical neuroimaging community faces when applying the FAIR principles to their research. This lecture was part of the FAIR approaches for neuroimaging research session at the 2020 INCF Assembly.

6
8
Duration:
55:13
Speaker:

Artificial intelligence (AI) is increasingly affecting almost all areas of life from jobs, healthcare and entertainment to public safety and defense. While advances in AI are associated with new opportunities for economic growth and well-being, they at the same time raise major ethical concerns about AI impact on social equality, transparency and accountability. In recent years, these issues have acquired a prominent role on the agendas of policy-makers around the world. Today the need to facilitate beneficial development of AI and regulate it in the public interest is regularly addressed in speeches of political leaders and policy documents prepared by national governments, international organizations, experts, consulting companies and stakeholders.

7
12
Duration:
41:06

Responsible Research and Innovation (RRI) is an important ethical, legal, and political theme for the European Commission. Although variously defined, it is generally understood as an interactive process that engages social actors, researchers, and innovators who must be mutually responsive and work towards the ethical permissibility of the relevant research and its products. The framework of RRI calls for contextually addressing not just research and innovation impact but also the background research process, especially the societal visions underlying it and the norms and priorities that shape scientific agendas.

8
17

In response to a growing need in the neuroscience community for concrete guidance concerning ethically sound and pragmatically feasible open data-sharing, the CONP has created an ‘Ethics Toolkit’.

 

 

These documents are meant to help researchers identify key elements in the design and conduct of their projects that are often required for the open sharing of neuroscience data, such as model consent language and approaches to de-identification.

 

This guidance is the product of extended discussions and careful drafting by the CONP Ethics and Governance Committee that considers both Canadian and international ethical frameworks and research practice.  The best way to cite these resources is with their associated Zenodo DOI:

 

 

zenodo.5655350

9
20

Open Brain Consent is an international initiative aiming to address the challenge of creating participant consent language that will promote the open sharing of data, protect participant privacy, and conform to legal norms and institutional review boards.

 

Open Brain Consent addresses the aforementioned difficulties in neuroscience research with human participants by collecting:

  • widely acceptable consent forms (with various translations) allowing deposition of anonymized data to public data archives
  • collection of tools/pipelines to help anonymization of neuroimaging data making it ready for sharing