To ensure the integrity of individual autonomy throughout the development of the neurotechnology industry.
This includes setting the standards for management and privacy of neurodata and determining “best practices” for the ongoing stewardship of associated data.
The Need for Best Practices
Neurodata holds the potential key to addressing some of the most significant issues facing society and humanity today. It is also vulnerable to abuse in the absence of clear and understandable standards of collection, accumulation, and use. As the OECD recently noted in its 2019 Recommendations for the Responsible Innovation of Neurotechnology, “At the same time, neurotechnology raises a range of unique ethical, legal, and societal questions that potential business models will have to address. These questions include issues of (brain) data privacy, the prospects of human enhancement, the regulation and marketing of direct-to-consumer devices, the vulnerability of cognitive patterns for commercial or political manipulation, and further inequalities in use and access.”
In the absence of industry led standards, any large scale breach or mis-use of neurodata has the potential to permanently stifle growth and innovation in the industry if trust is irrevocably eroded.
The Foundation recognizes this need and seeks to address it prior to any event to provide much needed clarity in the industry for the industry to develop in a manner that ensures that the concerns of individuals and humanity are put first.
The How of Best Practices
Working with a diverse cross section of representatives from industry, academia, NGOs, citizenry and other interested stakeholders, the Foundation will establish:
- Standards and best practices based on existing international laws, policy trends, and ethical considerations; and
- Processes for the amendment of best practices – both as standard course and as events require – taking in input from individuals, interested stakeholders, and third parties and voted upon by the Board of Directors.
Current Working Groups
The breadth of the legal issues implicated by consumer neurotechnologies and the use of neurodata is extensive. To support the establishment of our first set of best practices, we have established four initial working groups to prioritize issues and recommend policies:
First defined as the authority or ability of an individual to decide for oneself when and within what limits information about one’s private life should be communicated to others, self determination has taken on new meaning in the context of neurodata. This working group will take up questions such us:
• Scope and limits of individual rights to and in neurodata
• How to enforce limited access and controls on neurodata
Recent years have seen a range of data-based activities and practices come into question by regulators and consumers alike primarily for their lack of transparency and disclosure. This working group will address what is needed to build an environment of trust within neurodata dependent industries, including:
• Nature and scope of consent prior to data collection
• Ongoing duty of disclosure
As best practices and policies are established, we are faced with logistical and engineering questions around how to adhere to and enforce them. This working group will take up questions such as:
• Collaborative data models
• Alternative security protocols
One of the most significant questions facing the neurotechnology industry today is that of whether just because we can, does it mean we should. This working group will examine where industry should either self limit the application of neurodata or use of neurotechnologies.
Interested in getting involved in the best practices work of the Foundation? Do you want to join one of the Working Groups?
All matters related to the standards setting functions of the Foundation will be conducted in a fully transparent manner and made publicly available.
In 2017, the Morningside Group emphasized that neurotechnologies need to protect the agency and identity of individuals – reflected in the neurodata collected by them – as human rights.
The Global Brain Data Foundation is committed to the OECD’s 9 principles for the development of neurotechnologies:
Promoting responsible innovation to address health challenges, with a particular focus on:
- Avoiding harm, and show due regard for human rights and societal values, especially privacy, cognitive liberty, and autonomy of individuals.
- Preventing neurotechnology innovation that seeks to affect freedom and self-determination, particularly where this would foster or exacerbate bias for discrimination or exclusion.
Prioritising assessing safety in the development and use of neurotechnology, with a particular focus on: :
- Engaging in communication among researchers, research participants, health professionals, patients, members of the public, private stakeholders, and government stakeholders to incorporate concepts of autonomy, harm reduction, safety into research prioritisation processes.
Promoting inclusivity, including::
- Promoting an enabling policy environment that advances the inclusion of underrepresented populations including, inter alia, social and economic populations, as well as sex- and age-specific groups, in neurotechnology research and development.
- Take into account the diversity of cultures and strive to minimise inequalities with respect to, inter alia, socio-economic, cultural norms, in the development and use of neurotechnology.
Fostering scientific collaboration, core to the Foundation’s establishment:
- Promote interdisciplinary research and development where communities of scientists and engineers interact closely with the social sciences and humanities communities as well as with user and other relevant groups.
- Foster pre-competitive consortia of collaborative research across public research institutions, private non-profit organisations, private sector entities, and patient communities.
- Support the development of standards and best practices for the technical as well as ethical, legal, and social aspects of innovation in neurotechnology.
- Support an international culture of “open science” by creating joint infrastructures and environments for sharing, aggregating, auditing, and archiving data relating to neurotechnology as appropriate.
Enabling societal deliberation, with a focus on: :
- Promoting open communication across expert communities and with the public to promote neurotechnology literacy and the exchange of information and knowledge.
- Engaging in multi-stakeholder dialogues and deliberation to ensure diverse inputs into decision- making processes, public policy and governance.
- Ensuring that the results of formal dialogues are considered and taken into account in decision-making wherever possible.
- Ensuring processes for engaging stakeholders are fair, transparent, and predictable.
Enabling capacity of oversight and advisory bodies:
- Promote the further development of ethical guidance and best practices including rigor and reproducibility.
Safeguarding personal brain data and other information, with a particular focus on:
- Promote opportunities for individuals to choose how their data are used and shared, including options for accessing, amending and deleting personal data.
- Promote policies that protect personal brain data from being used to discriminate against or to inappropriately exclude certain persons or populations, especially for commercial purposes or in the context of legal processes, employment, or insurance.
- Ensure not only traceability of data collected and processed but also of medical acts in which neurotechnology is used.
Promoting cultures of stewardship and trust across the public and private sector, which is core to the Foundation’s establishment as outlined by the below:
- Encourage development of best practices and business conduct that promote accountability, transparency, integrity, trustworthiness, responsiveness, and safety.
- Support innovative approaches to social responsibility through the development of accountability mechanisms.
- Foster communication in the public sphere that avoids hype, overstatement, and unfounded conclusions, both positive and negative, and that discloses interests in a transparent manner.
- Identify any issues, gaps, and challenges within systems of governance and explore possible solutions through dialogue among regulators, the private sector, and the public.
- Promote trust and trustworthiness through norms, and practices of responsible business conduct.
Anticipating and monitoring potential unintended use and/or misuse, with a focus on:
- Implement safeguards and consider mechanisms to support integrity, autonomy, protection of private life, non-discrimination and dignity of the individual or of groups in the short and/or long term.
- Anticipate and prevent activities that seek to influence decision processes of individuals or groups by purposely affecting freedom and self-determination through, for example, intrusive surveillance, unconsented assessment, manipulation of brain states and/or behaviour.
- Where possible, take active steps to protect against potential misuse of neurotechnology.