Targeted Massachusetts
 THE ALLEN INSTITUTE FOR HUMAN RIGHTS HUMAN RIGHTS COUNCIL ADVISORY COMMITTEE QUESTIONNAIRE ON “NEUROTECHNOLOGY AND HUMAN RIGHTS" Questionnaire (Rough Draft) Background In accordance with Human Rights Council resolution 51/3, the Advisory Committee is preparing a study “on the impact, opportunities and challenges of neurotechnology with regard to the promotion and protection of all human rights” to be presented to the Council at its fifty-seventh session (September 2024). In the preparation of this study, the Advisory Committee was asked “to seek the views and inputs from, and to take into account the relevant work already done by, stakeholders, including Member States, international and regional organizations, the Office of the United Nations High Commissioner for Human Rights, the special procedures of the Human Rights Council, the treaty bodies, other relevant United Nations agencies, funds and programmes within their respective mandates, national human rights institutions, civil society, the private sector, medical and technical communities, academic institutions and other relevant stakeholders”. Neurotechnologies are defined for the purposes of this study, as those devices and procedures used to access, monitor, investigate, assess, manipulate and/or emulate the structure and function of the neural systems of natural persons. They are meant to either record signals from the brain and “translate” them into technical control commands, or to manipulate brain activity by applying electrical or optical stimuli. Questionnaire Deadline Responses to the questionnaire can be submitted until 2 July 2023. Nonetheless, on exceptional basis, late responses or further information relevant to the work of the Advisory Committee on this topic may be accepted. Questionnaire Please answer the questions that are most relevant to your field of expertise or operation. There is no need to answer questions that may not be relevant to your work. Please respond as succinctly as possible and provide examples and substantive information where possible.     QUESTIONS All stakeholders (core questions) General 1. Has your country taken any policy action or initiative in relation to neurotechnology and human rights at the national level ? If so, please share any relevant information. The answer is no. My supporting documentation. In 2022, The Neurorights Foundation proposed the addition of five (5) new human rights to address the ever-growing changes that Neurorights would present. The right to cognitive liberty, the right to mental privacy, the right to mental integrity, the right to psychological continuity, and the right to identity. These rights can be summed with the phrase, Intellectual property of an individual Human Being. 2. Is there any actor in the public or private sector developing this kind of technology in your country ? Please provide information, if possible. This technology exists in The United States in the private sector. The organization founded by Elon Musk legally named Neuralink incorporated in the state of California, The city of Freemont in the year 2016. The company seeks to succeed in the interface of Humans and computers also known as BCI, Brain to Computer interface. The company was approved for Human trials and testing in May of 2023. 3. Indicate your level of awareness (high/medium/low) in relation to the state of development of neurotechnologies and preparedness to tackle the challenges posed by the early commercialization of these technologies. My level of awareness is very high as I am following the development of neurotechnology on a daily basis. I am very concerned that the intellectual property of every human being on the Earth is in danger of being compromised should this technology fall into the wrong hands. Impact, opportunities and challenges: 4. What human rights will be mostly impacted by the development and use of neurotechnologies? Identify the three rights most impacted and briefly explain why. [Amendment lV] The right of the people to be secure in their persons. This right would be violated if a person’s mind were to be read or compromised. [Amendment V] No man will be made to be a witness against himself. This right would be violated when a man in court could not plead the fifth in lieu of his mind being read. [Amendment lV] The right of the people to be secure in their persons, houses, papers. This right would be violated when a person’s mind was searched for intellectual property. 5. What are the biggest challenges and risks that the development, test and use of neurotechnologies pose to human rights? Will such risks be amplified by the development of consumer-oriented neurotechnologies? According to an article on BSR, [Business for Social Responsibility] neurotechnology can record or interfere with human brain activity, from physical devices, like wearables and medical implants, to artificial intelligence (AI), designed to decode thought or spoken patterns. This can pose a threat to people’s privacy and mental integrity. Hence the proposal of establishing neurorights and technical principles for the implementation of these rights. In addition, according to an article on UNESCO, [United Nations Educational, Scientific and Cultural Organization] the effects of these technologies are still unclear and their unregulated use entail unprecedented risks for human rights related to freedom of thought, mental integrity and to some of its underlying preconditions such as dignity, identity or human agency. Lack of pertinent information in the general public may cause a deficit in cognitive function. There are no warnings written on the airwaves. 6. What groups are more vulnerable or at risk? Please, identify three and explain why. The low income families or individuals would be at risk as they do not understand or do not care to read instructions or warnings. The upper income families or individuals would be at risk as they could afford the wearables such as watches, tattoos etc. and don’t read warnings anyway. All children in general would be at risk as they experiment with everything, babies in particular. 7. What methods can be used to identify and assess the potential risks and impact of these technologies on human rights, in particular the human rights of persons with disabilities and other groups in vulnerable situations? Will such risks be amplified by the development of consumer-oriented neurotechnologies? Human Rights Impact Assessment: A Method for Healthy Policymaking – HHR (Archived) (harvard.edu) Human rights indicators | OHCHR Human Rights Indicators: A Guide for Measurement and Implementation | OHCHR (Book) Human Rights Indicators: A Guide for Measurement and Implementation Within each Nation State there should be an oversight committee to process the vast amounts of information available each day concerning the progress of Neurotechnologies, and Neuroethics HRIA can help to ensure that neurotechnologies are developed and used in a way that respects, protects and fulfills human rights for all. There are to be many benefits as well as risks for the disabled. The disabled can now control their video, radio, and many other household appliances with their minds. There are situations in which the disabled are taken brutally advantage of. 8. From a human rights perspective, what opportunities could the use of neurotechnologies bring? Can these opportunities be balanced against the identified risks and impact? Neurotechnologies are technologies that can monitor, manipulate, or enhance brain activity and function. They have various applications in medicine, education, entertainment, security, and justice. From a human rights perspective, neurotechnologies could bring some opportunities as well as some risks and challenges. Some of the possible opportunities are: Improving the quality of life and well-being of people with neurological disorders or disabilities by restoring or augmenting their cognitive, sensory, or motor abilities. Enhancing the learning and performance of individuals and groups by stimulating or modulating their brain activity. Promoting social inclusion and diversity by facilitating communication and empathy across different languages, cultures, and perspectives. Advancing scientific knowledge and innovation by enabling new ways of studying and understanding the brain and its relation to behavior and society. Some of the possible risks and challenges are: Interfering with the right to personal identity, free will, and mental privacy by accessing, altering, or disclosing one’s thoughts, emotions, memories, or preferences without consent or awareness. Creating new forms of discrimination or exploitation by using brain data to classify, judge, or manipulate individuals or groups based on their neural characteristics or capacities. Exacerbating existing inequalities or creating new ones by making neurotechnologies available only to certain segments of society or by imposing norms or standards that favor certain types of brains over others. Undermining the rule of law and due process by using neurotechnologies as evidence or tools in legal proceedings without adequate safeguards or regulations. These opportunities and risks are not mutually exclusive or exhaustive. They may depend on various factors such as the type, purpose, context, and governance of neurotechnologies. Therefore, it is important to balance them against each other and against other human rights principles and values. Some possible ways to achieve this balance are: Developing ethical guidelines and codes of conduct for the research, development, use, and oversight of neurotechnologies that respect human dignity, autonomy, diversity, and justice. Establishing Legal frameworks and mechanisms that protect the rights and interests of individuals and groups affected by neurotechnologies and that ensure accountability and transparency for their misuse or abuse. Promoting public awareness and engagement on the benefits and risks of neurotechnologies and fostering dialogue and collaboration among different stakeholders such as scientists, policymakers, practitioners, users, and civil society. Supporting education and capacity building on neurotechnologies and their ethical implications for various sectors and groups such as students, teachers, health professionals, lawyers, journalists, and policymakers. These are some possible ways to address the human rights issues of neurotechnologies. However, they are not definitive or comprehensive. They may require further refinement and adaptation to different contexts and situations. They may also raise new questions and challenges that need to be explored and resolved. Therefore, it is essential to keep an open mind and a critical eye on the evolving field of neurotechnologies and its impact on human rights123 9. Is the national legal framework adequate to face the challenges that the development, test and use of neurotechnologies pose to human rights? Please explain briefly and indicate the relevant pieces of legislation and whether there are plans to develop any (or further) legislation. There are ongoing efforts at the international level to develop a common framework or standards for neurotechnologies and human rights. For example: The International Bioethics Committee of UNESCO (IBC) published a report on the ethical issues of neurotechnology in 2021, which provides a comprehensive analysis of the current state of art of neurotechnology and its implications for human rights. The report also proposes a set of recommendations for policy makers, researchers, practitioners, and civil society to ensure that neurotechnology is developed and used in a responsible and ethical manner. The NeuroRights Initiative is a global coalition of experts and stakeholders that advocates for the recognition and implementation of neurorights as a new category of human rights. The initiative also aims to establish guidelines and best practices for the development and applications of enhancement neurotechnologies based on the principle of justice and guarantee equality of access to all citizens. The United Nations General Secretary’s report ‘Our Common Agenda’ in 2021 mentioned neurotechnology as a frontier human rights issue which makes necessary an update or clarification of the applicable human rights framework and standards with a view to preventing harms in the digital or technology spaces. ICATOR from Belgium [International Coalition Against Electronic Torture and Robotization of Living Beings] is making progress in establishing a framework and setting a precedent for all who follow. Targeted Justice from The United States is also setting a precedent in the legal system, establishing a legal framework in this nation state for all to follow. Therefore, depending on the Nation State or region, the national legal framework may be more or less adequate to face the challenges that neurotechnologies pose to human rights. However, given the rapid pace of innovation and the global nature of neurotechnology development and use, there is a need for more coordination and cooperation at the international level to ensure that neurotechnologies are governed by common ethical principles and human rights standards. 10. Does national legislation on privacy and data protection cover mental privacy and/or personal brain data? Please explain. The United States lacks a single, comprehensive federal law that regulates the collection and use of personal information. Instead, the government has approached privacy and security by regulating only certain sectors and types of sensitive information (e.g., health and financial), creating overlapping and contradictory protections. However, there are some laws that protect personal information such as the Privacy Act of 1974 which applies to federal agencies and their contractors. There are no specific laws that cover mental privacy or personal brain data. 11. From a human rights-protection perspective, what are the main domestic regulatory gaps that can be identified? What legal (or other) measures are necessary to avoid human rights violations arising from the use of neurotechnologies in your opinion? There are significant gaps and challenges in the current domestic and international regulation of neurotechnologies. Some of these include: The lack of clear definitions and standards for what constitutes neurotechnologies, brain data, or mental processes, and how they should be measured, stored, shared, or used. The lack of adequate oversight and accountability mechanisms for the development, testing, deployment, and evaluation of neurotechnologies, especially in non-clinical settings such as consumer, military, or judicial domains. The lack of harmonization and coordination among different jurisdictions and stakeholders on the ethical principles, legal frameworks, and best practices for neurotechnology governance. The lack of awareness in the medical community, local police, federal agencies and engagement on the ethical and social implications of neurotechnologies, and the potential risks and benefits for human rights. The importance to consider some possible legal (or other) measures that could help to avoid human rights violations arising from the use of neurotechnologies. Some of these include: Developing a comprehensive and coherent international agreement on neurorights that could provide a common normative basis for regulating neurotechnologies in a way that respects human dignity and diversity. Establishing national laws and policies that incorporate neurorights into existing human rights frameworks, and that ensure effective implementation and enforcement mechanisms for neurotechnology governance. Creating multidisciplinary and multi-stakeholder platforms that facilitate dialogue, collaboration, and innovation among scientists, engineers, ethicists, lawyers, policy makers, civil society organizations, and users of neurotechnologies. Promoting education and awareness campaigns that inform and empower the public about the opportunities and challenges of neurotechnologies, and that foster a culture of responsibility and respect for human rights. Sources: https://www.frontiersin.org/articles/10.3389/fnhum.2021.701258/full https://www.unesco.org/en/articles/risks-and-challenges-neurotechnologies-human-rights https://link.springer.com/article/10.1007/s12152-022-09511-0 https://bsr.org/ 12. Is your national institutional framework for human rights well-equipped to address the new challenges posed by neurotechnologies? The United States is neither close to being well-equipped to address the older human rights issues. But, in denial about what is actually happening in the nation state relative to Neurotechnologies. 13. What national entity would be best placed to exercise scrutiny and oversight to prevent potential abuses or misuses derived from the use of neurotechnologies? Is there any procedure in place to that effect? National Academies Science Engineering Medecine : The Keck Center of the National Academies at 500 Fifth Street in northwest Washington, D.C. The Keck Center provides meeting space and houses the National Academies Press Bookstore. https://www.nationalacademies.org/chr/committee-on-human-rights The CHR appeals for justice in support of colleagues worldwide who are suffering serious human rights abuses as a result of their professional work or their exercise of other internationally protected rights. 14. What are the main international regulatory and governance gaps that you have identified as regards neurotechnology and human rights? [See Question 11] 15. What actions would you advocate for to address these gaps and potential human rights impact at the international level? Please elaborate on specific normative or institutional measures you would propose and assess the feasibility of their implementation. The importance of considering some possible legal (or other) measures that could help to avoid human rights violations arising from the use of neurotechnologies. Some of these include: Developing a comprehensive and coherent international agreement on neurorights that could provide a common normative basis for regulating neurotechnologies in a way that respects human dignity and diversity Establishing national laws and policies that incorporate neurorights into existing human rights frameworks, and that ensure effective implementation and enforcement mechanisms for neurotechnology governance. Creating multidisciplinary and multi-stakeholder platforms that facilitate dialogue, collaboration, and innovation among scientists, engineers, ethicists, lawyers, policy makers, civil society organizations, and users of neurotechnologies. Promoting education and awareness campaigns that inform and empower the public about the opportunities and challenges of neurotechnologies, and that foster a culture of responsibility and respect for human rights. 16. What international organization, bodies, or agencies would be in your opinion best placed to oversee and prevent potential abuses or misuses resulting from the use of neurotechnologies? UNESCO: UNESCO is the United Nations agency that promotes international cooperation in education, science, culture, and communication. It has a mandate to foster ethical reflection and dialogue on emerging scientific and technological issues that have an impact on human rights and dignity. UNESCO has established several normative instruments and advisory bodies to guide ethical decision-making in various fields of science and technology, such as bioethics, human genome research, artificial intelligence, and information ethics5. UNESCO could provide a global platform for developing ethical principles and guidelines for neurotechnology research and innovation. https://www.unesco.org/en IEEE: IEEE is the world’s largest technical professional organization dedicated to advancing technology for the benefit of humanity. It has a strong commitment to ethical standards and social responsibility in engineering practice. IEEE has launched several initiatives to address the ethical implications of emerging technologies, such as neurotechnology6, artificial intelligence7, autonomous systems, and mixed reality. IEEE could contribute to developing technical standards and best practices for neurotechnology design and development. https://www.ieee.org/ WHO: WHO is the directing and coordinating authority on international health within the United Nations system. It provides leadership on global health matters, shapes the health research agenda, sets norms and standards, articulates evidence-based policy options, provides technical support to countries, and monitors and assesses health trends. WHO has a role in ensuring that neurotechnologies are safe, effective, equitable, and accessible for health promotion and disease prevention. WHO could provide guidance on the clinical evaluation and regulation of neurotechnologies for health purposes. https://www.who.int/ Civil society organizations: Civil society organizations are non-governmental entities that represent various interests and values of citizens in relation to social issues. They can play an important role in raising awareness, advocating for change, monitoring compliance, providing feedback, facilitating participation, and fostering accountability in relation to neurotechnology research and innovation. Some examples of civil society organizations that are active in this field are: The Neuroethics Society, The International Neuroethics Society, The Nuffield Council on Bioethics, and The Hastings Center. https://www.neuroethicssociety.org/ https://www.thehastingscenter.org/ https://www.nuffieldbioethics.org/ II. Private actors and other stakeholders with experience or expertise in the subject-matter, such as medical and technical communities, and academic institutions (specific questions) 17. What specific characteristics would you emphasis as unique and distinctive of neurotechnologies? Neurotechnologies are among the fastest moving technologies in the World today, both in the military and private sectors. Neurotechnologies or specifically BCI is the only field that could encompass all fields. This technology could be man’s best friend, or an enemy forever learning and changing.. https://www.techopedia.com/definition/34091/neurotechnology 18. Have you introduced or are you considering introducing any adjustment to your activities or business model such as incentives, indicators or performance metrics of governance in response to these specific characteristics? Please explain. Our organization as well as many others in the targeted community or Havana Syndrome community are constantly watching, working, and waiting. We want to perceive what new modifications or innovations will affect our cause further and or help us to be free from this Scourge on mankind. Watchdog groups have been formed for this purpose. Our media organizations are on the air every day or night spreading the word of our plight. 19. Has your company/organization undertaken any specific action or measure to mitigate impacts arising from the use of neurotechnologies? Are any of these actions or measures specifically addressed to mitigate human rights risks? [See Question 18] 20. Does your company or organization implement the principles for responsible innovation in neurotechnology? Please elaborate. N/A 21. Has your company or organization developed or plans developing (or adopting) an ethical code of conduct or human rights strategy for the development, testing or commercialization of neurotechnologies? Please outline such initiatives and provide a copy of relevant documents, if possible. N/A 22. What national regulation or framework do you consider is needed to avoid a potentially negative human rights impact of neurotechnology? There is no single or universal answer to what kind of regulation or framework is needed to avoid a potentially negative human rights impact of neurotechnology. Different types of neurotechnology may require different levels of oversight and intervention, depending on their intended use, invasiveness, reliability, and potential harm. https://unesdoc.unesco.org/ark:/48223/pf0000384185/PDF/384185eng.pdf.multi https://www.humanrightspulse.com/mastercontentblog/okibiphj7o2e1bpn8tk74a2dy5bg68 The regulation of neurotechnology should be based on a human rights perspective, ensuring that it respects the dignity, autonomy, consent, and well-being of individuals and groups The regulation of neurotechnology should be adaptive, flexible, and responsive to the evolving scientific and social context, as well as the emerging risks and opportunities of neurotechnology. The regulation of neurotechnology should be informed by evidence-based research, stakeholder engagement, public consultation, and ethical deliberation, involving a diversity of perspectives and interests. The regulation of neurotechnology should be transparent, accountable, and enforceable, with clear roles and responsibilities for different actors, such as developers, providers, users, regulators, and oversight bodies. The regulation of neurotechnology should be harmonized and coordinated at the national and international levels, fostering collaboration and exchange of best practices among different jurisdictions and sectors. The regulation of neurotechnology should be supportive of innovation and development, while ensuring safety, efficacy, quality, and accessibility of neurotechnological products and services. These principles and guidelines can provide a basis for developing more specific and concrete regulatory measures for different types of neurotechnology. 23. Which regulatory framework such as application of specific, sectorial, national, autoregulation or a combination of them do you believe is best suited to the specific characteristics of neurotechnologies? [See Question 22] III. International and regional organizations; United Nations agencies, funds and programmes; national human rights institutions; and civil society (specific questions) 24. Please outline the relevant work that your organization, agency or department has done in relation to neurotechnology and human rights. Please share the main outcomes and recommendations (if applicable). N/A 25. Please describe any measures undertaken aimed at coordinating, collaborating or seeking synergies with the work of other organizations in relation to neurotechnology. N/A 26. What are the main international regulatory and governance gaps that you have identified as regards neurotechnology and human rights? [See Question 11] IV. Special Procedures of the Human Rights Council (specific questions) 27. Has your mandate considered the issue of neurotechnology and human rights? If so, please indicate the main outcomes and recommendations and include relevant references and links. N/A 28. What impact of neurotechnology do you foresee in relation to the human rights within your mandate? What actions would you propose or undertake to mitigate any adverse impact or risk? Please highlight the risks attached to this issue and potential opportunities, if relevant. N/A 29. What actions could be undertaken by the Coordination Committee of Special Procedures to address any negative human rights impact arising from neurotechnology? N/A 30. What are the gaps, if any, in the existing international human rights protection framework to address the impact of neurotechnology? How could they be best addressed? [See question 11] 31.How could the current international human rights framework be best used or developed to address the impact, opportunities and challenges of neurotechnology with regard to the promotion and protection of all human rights? [Answered] V. United Nations Treaty Bodies (specific questions) 32. Has your treaty body considered directly or indirectly the issue of neurotechnology and human rights (while considering individual complaints, examining periodic reports or elaborating general comments)? If so, please indicate the main outcomes and recommendations (include relevant references and links). Committees of independent experts that monitor implementation of the core international human rights treaties = State(s), and The United Nations 33. What impact of neurotechnology on human rights do you foresee from the perspective of your mandate? Please highlight the risks attached to this issue and potential opportunities, if relevant, and indicate what actions would you propose or undertake to mitigate risks. N/A 34. What are the gaps, if any, in the existing international human rights protection framework to address the impact of neurotechnology? How could they be best addressed? [See Question 11] 35. How could the current international human rights framework be best used or developed to address the impact, opportunities and challenges of neurotechnology with regard to the promotion and protection of all human rights? [See Question 22] VI. Office of the United Nations High Commissioner for Human Rights (specific questions) 36. What work is OHCHR currently carrying out in the field of neurotechnology and human rights? Please provide any relevant information such as links to reports, background material, sections or units involved, etc. The Office of the High Commissioner for Human Rights (OHCHR) is involved in the field of neurotechnology and human rights through its support to the Human Rights Council and its Advisory Committee. The Human Rights Council adopted resolution 45/23 on 7 October 2020, requesting the Advisory Committee to prepare a study on the impact, opportunities and challenges of neurotechnology with regard to the promotion and protection of all human rights. The Advisory Committee has issued a questionnaire to collect inputs from various stakeholders on this topic. The study is expected to be presented to the Council at its fifty-seventh session in 20231. The OHCHR also provides substantive and technical assistance to the Special Rapporteur on freedom of religion or belief, who has expressed concern about the potential impact of digital technology, neuroscience and cognitive psychology on the right to freedom of thought. Additionally, the OHCHR monitors and reports on relevant developments in this field through its publications, such as the report on new and emerging digital technologies and human rights and the report on human rights in the era of artificial intelligence. Human rights indicators | OHCHR 37. What are the gaps, if any, in the existing international human rights protection framework to address the impact of neurotechnology? How could they be best addressed? [See question 11] 38. How could the current international human rights framework be best used or developed to address the impact, opportunities and challenges of neurotechnology with regard to the promotion and protection of all human rights? [See question 9] Frank Allen The Allen Institute for Human Rights