Draft:The Neurorights Foundation V2

The Neurorights Foundation is an American nonprofit organization focused on addressing ethical, legal, and societal implications associated with neurotechnology. Established in 2022, the foundation advocates for the incorporation of specific protections, termed "neurorights," into existing human rights frameworks to safeguard individuals against potential misuses of neurotechnology. Recognized as a 501(c)(3) charitable organization, it operates at the intersection of neuroscience, technology, and human rights, emphasizing the protection of neural data and the ethical development of neurotechnology.

The foundation was inspired by discussions held among neuroscientists, neurotechnologists, clinicians, ethicists and machine-intelligence engineers, including significant contributions from Dr. Rafael Yuste, a professor at Columbia University and a leading figure in the BRAIN Initiative. It champions five key neurorights: the right to mental privacy, mental identity, free will, fair access to mental augmentation, and protection from bias, aiming to fill gaps in current human rights protections.

The Neurorights Foundation's stated mission is to "engage the United Nations, regional organizations, national governments, companies, entrepreneurs, investors, scientists, and the public at large to raise awareness about the human rights and ethical implications of neurotechnology." Through research, advocacy, and outreach it has contributed to policy discussions and legislative efforts in multiple countries and at the United Nations, striving for global standards that ensure neurotechnology's ethical use and development. The foundation's activities also include producing research publications, influencing legal and regulatory frameworks , and raising public awareness about the implications of advancing neurotechnology.

History
2017: Morningside Group - Columbia Workshop

The concept of neurorights, as a human rights approach to the ethical and societal issues of neurotechnology, was born out of an intensive three-day workshop at Columbia University in 2017, organized by the NeuroTechnology Center. This event, sponsored by the National Science Foundation, gathered academic leaders, hosted by Dr. Rafael Yuste from Columbia University and Dr. Sara Goering from the University of Washington, and was attended by 25 experts, representing the BRAIN initiatives from US, Europe, Canada, Israel, China, South Korea, Japan and Australia, and included also prominent representatives from the tech industry (Google), neurotech companies (Kernel), tech activists, researchers, clinical doctors, patient advocates and neuroethicists. The meeting was held at Columbia University's Morningside campus in New York City, and the deliberations on the ethical and societal implications of neurotechnology and machine intelligence led to the formulation of five Neurorights. A position paper summarizing the conclusions was published later that year in the journal Nature. In addition, another paper proposing neurorights, and in excellent agreement with the Morningside proposal, was independently published the same year. Since then, similar ethical guidelines have been proposed to regulate neurotechnology by many different groups, international organizations and countries.

2018: Columbia University's Neurorights Initiative

In 2018, Dr. Yuste received the Eliasson Global Leadership Award from the Tällberg Foundation recognizing his work in science advocacy, in both the BRAIN Initiative and the Morningside Neurorights Declaration. As a personal pledge after receiving the award, Dr. Yuste founded the Neurorights Initiative (NRI) at Columbia University's Neurotechnology Center.

2020: Origins of the Neurorights Foundation

In September 2020, Dr. Rafael Yuste was introduced to Jared Genser, an international human rights lawyer, by Tom Cummings, who chaired the jury of Tällberg Foundation’s now titled Tällberg-SNF-Eliasson Global Leadership Prize, which had been awarded to Genser in 2020. Despite having no science background, Genser immediately understood that protecting brain data was an urgent human rights issue. They immediately began an extended series of discussions where each of them educated the other about their respective fields.

2021: Developing a Neurorights Agenda for the United Nations

Coming from their discussions, in early 2021, Genser, Yuste, and Stephanie Herrmann published a first-ever journal article that laid out a proposed approach for how the United Nations could begin working comprehensively to protect brain data, entitled “It’s Time for Neuro-Right: New Human Rights for the Age of Neurotechnology”, which they published in Horizons Journal of International Relations and Sustainable Development.

2022: Establishment of the Neurorights Foundation

On March 12, 2022, co-founders Jared Genser and Jamie Daves, with Dr. Rafael Yuste as Chair, formally established the Neurorights Foundation, incorporating the NRI and marking a pivotal moment in its development. Since its founding, the organization has achieved significant progress in promoting neuroethical standards in the United States and worldwide. In December 2022, the Alfred P. Sloan Foundation approved a two-year grant to support the work of the Neurorights Foundation.

The Five Neurorights
The five neurorights emerged from a workshop organized by the Morningside Group at Columbia University in 2017. They are:


 * 1) The right to mental privacy: All data obtained from measuring neural activity should be kept private. If stored, there should be a right to have it deleted at the subject's request. The sale, commercial transfer, and use of neural data should be strictly regulated.
 * 2) The right to mental identity: Boundaries must be developed to prohibit technology from disrupting the sense of self. When neurotechnology connects individuals with digital networks, it could blur the line between a person’s consciousness and external technological inputs.
 * 3) The right to free will: Individuals should have agency and ultimate control over their own decision-making, without unknown manipulation from external neurotechnologies.
 * 4) The right to fair access to mental augmentation: There should be established guidelines at both international and national levels regulating the use of cognitive enhancement neurotechnologies. These guidelines should be based on the principle of justice and guarantee equality of access.
 * 5) The right to protection from bias: Countermeasures to combat bias should be the norm for algorithms in neurotechnology. Algorithm design should include input from user groups and collectives to foundationally address bias.

Foundation Activities
The foundation focuses on three main activities in pursuit of its mission: research, advocacy, and outreach.

Research
The Neurorights Foundation produces independent research publications examining neurotechnology's technical, legal, social, and ethical implications. Adopting a multidisciplinary perspective, the foundation targets a wide audience by publishing in fields such as international relations, law, science, neuroethics, and human rights. Its outputs, including industry reports, market analyses, and academic papers, aim to inform stakeholders and guide the ethical application of neurotechnology.

Reports


 * Genser, Jared; Damianos, Stephen; Yuste, Rafael. "Neurotechnology Consumer User Agreements" (Forthcoming 2024)
 * Lively, Saar Belle. "Market Analysis: Neurotechnology 2022." March 2023.
 * Genser, Jared; Herrmann, Stephanie; Yuste, Rafael. "International Human Rights Protections Gaps in the Age of Neurotechnology." May 6, 2022.

Publications


 * Yuste, Rafael. "Advocating for neurodata privacy and neurotechnology regulation." Nature Protocols, 18, 2869–2875 (2023).
 * Yuste, Rafael; De La Quadra-Salcedo, Tomás. "Neuro-Rights and New Charts of Digital Rights: A Dialogue Beyond the Limits of the Law." Indiana Journal of Global Legal Studies, 30, 15 (2023).
 * Álamos, María Florencia; et al. "A Technocratic Oath." In Protecting the Mind: Challenges in Law, Neuroprotection, and Neurorights. Cham: Springer International Publishing, 163-174, 2022.
 * Baselga-Garriga, Clara; Rodríguez, Paloma; Yuste, Rafael. "Neuro rights: A human rights solution to ethical issues of neurotechnologies." In Protecting the Mind: Challenges in Law, Neuroprotection, and Neurorights. Cham: Springer International Publishing, 157-161, 2022.
 * Rafael Yuste, Jared Genser, and Stephanie Herrmann, It's Time for Neuro-Rights: New Human Rights for the Age of Neurotechnology, 18 Horizons Journal of International Relations and Sustainable Development 154-164, Winter 2021
 * Goering, Sara. et al. "Recommendations for Responsible Development and Application of Neurotechnologies." Neuroethics, 14, no. 3: 365-386, 2021.
 * Yuste, Rafael; et al. "Four Ethical Priorities for Neurotechnologies and AI." Nature, 551, no. 7679: 159-163, 2017.

Advocacy
The Foundation pursues advocacy efforts across international and national levels, industry sectors, and public engagement, incorporating neurorights into legal and regulatory systems. At the international level, the Foundation addresses the unique human rights challenges posed by neurotechnology, which were not envisioned by existing international human rights treaties. Nationally, it pushes for the development and adoption of new legal and regulatory frameworks to safeguard against the misuse of neurotechnology. Within industry, the Foundation advocates for the creation of new ethical codes in collaboration with stakeholders, setting standards for self-governance and accountability. For the general public, it focuses on raising awareness about neurotechnology's potential and the importance of understanding its possible misuse or abuse. The NRF has supported initiatives in Chile, Brazil, Mexico, the United States, and engagements with the United Nations.

Outreach
The Foundation acknowledges the critical role of public awareness and education in shaping the future of neurotechnology. With technological advances rapidly altering the landscape of possibilities, it is imperative to inform the public about both the potential benefits and risks of neurotechnology. Outreach initiatives raise public awareness about neurotechnology, and include educational programs, community engagement, and media communications to inform the public about the benefits and risks.

Theater of Thought, a documentary film about the ethics of neurotechnology made by Dr. Rafael Yuste in collaboration with director Werner Herzog, was released in 2022 at the Telluride Film Festival, NY Docs, and the Toronto International Film Festival. The Foundation offers screenings of the film for a diverse audience including scientific/research groups, medical campuses, societies, academic institutions, policy organizations, NGOs, government agencies, and governing bodies.

Notable Policy Achievements
The Neurorights Foundation has been pivotal in advancing legal and regulatory advancements in the United States, Brazil, Chile, Mexico, and the United Nations.

Chile: In October 2021, the Chilean Parliament unanimously passed a constitutional amendment “to protect brain activity and the information derived from it.” The Neurorights Foundation inspired this amendment together with Senator Guido Girardi, and collaborated closely with governmental bodies including the Senate and the Chamber of Deputies, the Chilean Academy of Science, the Minister of Science, and leading neuroscientists from institutions such as the Pontificia Universidad Católica (PUC) and Universidad de Chile to advocate for neuroprotection legislation. In August 2023, Chile's Supreme Court enforced neurorights in a landmark case (Girardi vs. Emotiv), enforcing the legal framework for the protection of neural data.

Brazil: On December 20, 2023, the Brazilian state of Rio Grande do Sul unanimously incorporated neurorights into its constitution through landmark legislation aimed at safeguarding neural data from commercial misuse. This milestone followed an earlier visit by Dr. Yuste and Procuradora Camila Pintarelli to Gabriel Souza, vice governor of Rio Grande do Sul, on July 6th, 2023. In June 2023, Senator Randolfe Rodrigues introduced an amendment to Article 5 of Brazil's constitution on Neurorights, a move supported by the Neurorights Foundation, signifying a significant step toward protecting individual neuroprivacy and autonomy.

Mexico: On October 30, 2023, the Mexican Charter of Digital Rights officially integrated neurorights, with significant contributions from the Neurorights Foundation's advocacy efforts. From October 2022 to July 2023, the foundation played a crucial role in promoting neurorights, hosting a symposium with Fundacion Kamanau and addressing the Chamber of Deputies of the Congress of Mexico on the subject.

United Nations: Dr. Rafael Yuste's meeting with UN Secretary-General Antonio Guterres in March 2020 and the incorporation of neurotechnology as one of human rights updating goals in the United Nations Common Agenda contributed significantly to raising awareness and fostering dialogue on neurorights at the international level. The United Nations Human Rights Council's adoption of resolution A/HRC/51/L3 on neurotechnology and human rights on October 6, 2022, marked a significant milestone for neurorights.

Colorado, USA:  The Neurorights Foundation played a pivotal role by providing expert consultations and testifying in support of the Neurodata Protection Bill HB24-1058, introduced by Rep. Cathy Kipp and sponsored by the Colorado Medical Society. On February 9, 2024, the bill was passed by the Colorado House of Representatives with a vote 61-1. If approved by the Senate, it will become the first U.S. bill to specifically target neural data protection, extending the protections of the Colorado Privacy Act (CPA).

Theater of Thought: A Documentary by Werner Herzog
Theater of Thought, a documentary film about the ethics of neurotechnology directed by Werner Herzog and filmed in collaboration with Prof. Yuste was released in 2022. The documentary brings to light the medical benefits and ethical concerns of neurotechnology, featuring key figures from the foundation and the neurotechnology field. The film follows Professor Yuste, Chief Scientific Advisor of the movie, along a road trip with Herzog to speak with researchers, entrepreneurs, scientists, human rights lawyers, and more. The film is multifaceted, illuminating the technological advances that are helping people overcome brain-related illnesses, confronting conspiracy theories over implanted chips, and questioning the politics of mind control. The film includes interviews with NRF co-founders Jared Genser and Jamie Daves, and a set of expert interviewees including Prof. Polina Anikeeva, Prof. Richard Axel, Prof. Cornelia Bargmann, Prof. Edward Chang, Prof. Karl Deisseroth, Prof. John Donoghue, Prof. Eberhard Fetz, Prof. Joseph Fins, Prof. Jack Gallant, Dr. Dario Gil, Prof. Sara Goering, Dr. Tom Gruber, Senator Guido Girardi, Prof. Uri Hasson, Bryan Johnson, Dr. Christof Koch, Dr. Kristin Lauter, Prof. Joseph LeDoux, Phillipe Petit, Prof. Rajesh Rao, Prof. Ken Shepard, and Dr. Rafael Yuste.