Recommendations for Responsible Development and Application of Neurotechnologies

Abstract

Advancements in novel neurotechnologies, such as brain computer interfaces (BCI) and neuromodulatory devices such as deep brain stimulators (DBS), will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose (1) democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, (2) new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, (3) new methods of identifying and preventing bias, and (4) the adoption of public guidelines for safe and equitable distribution of neurotechnological devices.

“Nothing to Lose, Absolutely Everything to Gain”: Patient and Caregiver Expectations and Subjective Outcomes of Deep Brain Stimulation for Treatment-Resistant Depression

“…The current findings hold a number of implications for informing and consenting participants to clinical DBS research. There have been calls from both neuroethics and scientific communities for the long-term risks and consequences of participation in psychiatric DBS trials to be robustly outlined for potential participants ( Hendriks et al, 2019 ; Goering et al, 2021 ; Vedam-Mai et al, 2021 ). This would include thoroughly addressing the burden associated with participation (regular travel to research center, clinical tests), information on the day-to-day impact of DBS (e.g., recharging, stimulation side-effects, psychosocial adjustment), and providing clear guidance on post-trial continuity of care (given DBS can be a life-long intervention that is dependent on specialist care and requires maintenance) ( Thomson and Carter, 2020 ).…”

On Neurorights

“…By shifting the focus of the neurorights discourse from ethical-legal analysis to policy advocacy, this proposal exerted a great impact on nation-level legislative reforms, most notably in the Republic of Chile. Although the semantics, theoretical justification and normative demarcation of these rights were not addressed in the original article, this proposal was further elaborated in more detail a few years later by Yuste et al (2021) as well as Goering et al (2021). In addition, Yuste's advocacy work led first to the creation of the Neurorights Initiative at Columbia Universitythe first institutional think-thank on neurorights-and then, in collaboration with European and North American partners, to the Neurorights Network, i.e., the first international network of scholars working on neurorights, whose membership currently spans four continents.…”

Is Your Neural Data Part of Your Mind? Exploring the Conceptual Basis of Mental Privacy

“…By contrast, members of the Morningside Group suggest that, given the biological nature of the signals that carry ND, they should be protected by physical privacy (Goering & Yuste, 2016;Goering et al, 2021;Yuste et al, 2017). This privacy dimension is related to the access to our organic samples (the fact that these cannot be gathered and stored without consent) and is therefore grounded in bodily integrity.…”

“…Additionally, ND cannot be commercially transferred and used but only donated for altruistic purposes. That is, ND commercialization is prohibited regardless of consent status (Goering & Yuste, 2016;Goering et al, 2021;Yuste et al, 2017). As the first country with a Neuroprotection Bill that has taken up this proposal, Chile has become a pilot case.…”