This post first appeared in The Neuroethics Blog on January 26, 2021 as “THE GLOBAL BRAIN DATA FOUNDATION: A SUPPLEMENTAL INITIATIVE FOR EMPOWERING NEURODATA USE AND POLICY” by Ryan Triplette and Devon White.
The world is in a time of psychological distress. Worldwide events and the pandemic have exacerbated an already looming mental health crisis. Forced and unexpected isolation, illness, and unemployment are pushing our ability to manage long established injustices and anxieties to its limit. However, turmoil often readies us for transformation. Previously overlooked problems are prioritized; needs acutely identified; and solutions actively sought. This moment is no different.
New and emerging consumer neurotechnologies hold great promise. They present a potential tool to understand and mitigate the mental impact on populations of stressful experiences, such as those endured during this unique period of time. Further, they hold the potential to support the development of personal and collective wellbeing; helping people to not only survive but thrive in their daily lives. However, while the clinical and wellness uses of neurotechnologies may give us indicators of their promise, their application in the consumer context is not yet fully known or understood.
Neurodata in a sense can present quantifiable in-time snapshots of “states of mind.”1 These measurable, and therefore modifiable, snapshots provide pathways to “program” an organ that is connected to every other system in the body. Because of the privileged top-down control features of the brain, neurodata may provide the ability to influence all behaviors, biases, and decisions.2 Crucially, this “programming” happens prior to any awareness on the part of the individual.
In an age driven by the massive collection and use of data, consumer neurodata could be the most relevant and valuable to shaping the future. It is also arguably the most personal. As a result, the safety and proper use of this new form of data is of the highest possible concern. For while the information contained within it could hold the key to a greater understanding of the human condition3, it is also subject to the same vulnerabilities and limitations as other types of data.
This does not mean that its commercial application should be prematurely limited. Doing so would only stunt a market that is only beginning to show glimmers of growth. It also does not mean that it should be treated the same as other types of personal information. Previous legislative and regulatory efforts to protect personal data have realized mixed results4. And in a policy environment that often presents the discussion as a false dichotomy between innovation and privacy, the challenge is to support both.
With the market poised for expanded adoption in the coming years, it is imperative to take up this challenge now. In the absence of legal clarity, a new approach is needed; one unbeholden to historical positions and concepts of privacy and data use5 — rather, one engaging questions surrounding the use and treatment of privately-held neurodata through the lens of consumer empowerment.
Building industry-wide trust around data security, data control, best practices, and the adoption of standardized data formats is primary to the mission of the Global Brain Data Foundation. We embrace the use of neurodata to support humanity’s general well-being and believe that the growth of the consumer neurotechnology market depends on a firm understanding of the ethical, legal, societal, and market expectations that accompany neurodata use early in its adoption.
The Foundation was created to complement and expand the established efforts of organizations such as the Organization of Economic Cooperation and Development, and the International Brain Initiative and its member initiatives, to name a few. However, it uniquely connects these ongoing efforts to the critical challenges facing the technology industry today: questions of consumer trust and citizen engagement which, if left unattended or abused, threaten the growth and adoption of this new and potentially massively beneficial field of neurotechnology.
Using a “bottom up” multi-stakeholder approach, we are building a dialogue with and amongst all relevant stakeholders, including, most importantly, the public citizenry. Engaging stakeholders in an early, ongoing, and transparent manner will help to embed integrity within the system and support for neurodata’s potential benefits. Further, this process encourages ethical leadership and supports the development of a trusted global set of best practices for handling neurodata.
The more dependent technology is on personal data, the greater the need for transparency and accountability to consumers. To realize its full market and societal potential, the consumer neurotechnology industry must develop a culture of trust and inclusion. Further, given the potential use of neurodata to influence personal behavior, we believe that concepts of consumer control and self-determination must be built into the core of any and all neurodata efforts to ensure that individuals have explicit control over their own brain and how it is influenced.
Recent worldwide disruptions reflect the epic hardship endured by many and has triggered an increased corporate sensitivity to societal needs6. It has brought previously unseen or overlooked vulnerabilities in engagement to light, especially in understanding consumer comfort (or lack thereof) with developments in science and technology. There is a need to establish new forums and methods of engagement and development; ones that provide industry with a way to more easily understand the joint needs and expectations of individual consumers and the larger society. The Global Brain Data Foundation is creating such a forum.
The models of transparency and multistakeholderism7 that underpin the Foundation’s initiatives provide participants with multiple feedback loops which, if embedded within the market, will:
- Build the trust that is essential for the subsector’s social license to operate;
- Improve the basis of consumer knowledge regarding their rights and potential uses of neurodata;
- Establish best practices for the private and commercial use of neurodata that is crafted with an eye to future societal concerns, anticipating and protecting against negative events potentially impacting market growth; and
- Develop a single, secure, vast database accessible through a unified API that enables not only greater organizational collaboration but also, importantly, individual control over their data.
While focused on developments within the consumer neurotechnology industry, it is the expectation that, as the organizations reach agreements within and across interests, the process can and will support discussions not only within the neurotechnology industry but beyond.
To some, these goals may seem ambitious. However, history shows that advancement and innovation require ambitious goals partnered with collaboration. Indeed, a commitment to ambition and collaboration has served as the cornerstone of growth in neuroscience and to a greater understanding of the human condition.
There may be no single answer to the challenges facing neurodata development, and legal clarity is unlikely in the short term. We believe, though, that the collection and curation of neurodata into standard, usable formats will enable ever-more refined user control and that individual empowerment is paramount to a successful future for humanity. Such data offers us a mechanism to jointly contend with the exponential changes technology is ushering in and flourish by design. We believe that by enabling individuals as well as third parties to test various stimuli to determine optimal user outcomes (be it neuro-performance centers improving a user’s cognition or a social media site tailoring content to match or improve a user’s current brain state), neurodata has the potential to positively impact our species as a whole. However, to safeguard this awesome power, it is of the utmost importance that healthy ground rules are in place for how this technology is used and what is and is not allowed.
While few understand the potentially transformational impact the consumer neurotechnology industry may have, the readers of The Neuroethics Blog do. To you we say that it is imperative to support initiatives clarifying the legal and ethical voids the rapidly expanding neurotechnology industry is navigating. If you are interested in supporting our approach, we welcome it and invite you to consider joining our policy and technology development efforts or current fundraising campaign.
- Examples range from the use of brain imaging in the assessment and treatment of psychopathy to US military using brain imaging data to better understand the relationship between cognitive states and performance.
- Beyond those previously mentioned, commercial applications of neurodata to influence behavior have primarily focused on neuromarketing and increasing emotional intelligence of companies. However, looking further down the line, though, there is increasing interest in possibilities for human brain emulation.
- The implications of this potential for forensic psychiatry are already being examined in both the US and EU.
- Previous efforts to regulate personal data have focused primarily on the context in which it was collected; namely, in either medical or consumer environments. Despite their admirable intents, almost all efforts have resulted in unintended consequences when applied to developing technologies. The most notable of these are: (1) the Health Insurance Portability and Accountability Act (HIPAA), which has been amended a number of times since first enacted 20 years ago to address the strict limitations that it places on the commercial application of medical data and concerns about its impact on the adoption of new medical technologies; and (2) the European Union’s General Data Protection Regulation (GDPR), which has been criticized for the sweeping application of informed consent requirements to collect massive amounts of personal data and disproportionate burdensome cost of compliance on small companies.
- To date, regulations have taken a highly paternalistic approach to data; assuming that the more personal the data, the more need to impose restrictions on its use. This approach has proven exceedingly difficult to apply in an exceedingly difficult to apply to AI-driven technologies, where the nature of what personal information is collected is unclear.
- This shift began a little over a year ago with a commitment by the Business Roundtable to stakeholder capitalism, an approach that has been led by the B Corp movement and supported by others in the business community.
- The Foundation is modeling its initial efforts on the ICANN multistakeholder model primarily due to the flexible approach that it has taken over the years to adapt to the needs of its community.
Rooted in Paris and Washington, DC, Ryan Triplette is the Founder of Canary Global Strategic and Co-Founder / Chairman of the Global Brain Data Foundation. An attorney by training, Ryan has over 15 years of experience with the innovation economy as a senior policymaker, corporate executive, and strategic advisor to senior level government officials and multinational executives on matters impacting product development, corporate licenses to operate, and consumer trust.
Devon White supported concepts included in this post. Devon is the Co-Founder and CEO of Field, a neuro-enhancement company and supporter and partner of the Foundation, and Co-Founder of the Global Brain Data Foundation.
The Global Brain Data Foundation is a charitable and educational 501(c)(3) tax exempt nonprofit organization established to serve as a data repository, best practices and educational organization for the proper and ethical development of consumer neurotechnologies and collection, accumulation, licensing, and use of neurodata. It is supported by General Synaptic (GenSyn) LLC, a mission-complementary wholly-owned for-benefit company, handling the practical and commercial applications of the Foundation’s educational work. The Foundation is actively soliciting donations and engaging partnerships in support of the organization’s mission. For more information on how to get involved or support its efforts, please visit here or contact Ryan Triplette directly at firstname.lastname@example.org.