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The Fondation Brocher is an essential player in this vital thinking process: one which will help make us aware of the real challenges in using our resources for maximum impact on the health of the people of the world.

 

 

Professor Daniel Wikler, Harvard University

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The Brocher Foundation is a Swiss non-profit private foundation  recognized of public interest. Your donations are tax deductible according to the regulations in force.

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December 1 - 3, 2021

Expert Workshop on the Right to Science

Organizers:

Introduction
Article 27, 1 of The Universal Declaration of Human Rights (1948)
Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.
Article 15 of International Covenant on Economic, Social and Cultural Rights (1966, entry in force 1976)

The States Parties to the present Covenant recognize the right of everyone (…) to enjoy the benefits of scientific progress and its applications (…)

Technological change is intense, rapid and characterized by the convergence of the physical, digital and biological worlds. This “4th industrial revolution” has a very deep impact in human life because it might change not only society but even human beings themselves, through genetic engineering or human-machine interfaces.
Our hypothesis is that decisions concerning the development and use of these powerful technologies should be adopted within a human rights framework, and with a holistic and inclusive view. All crosscutting human rights principles, such as transparency, non-discrimination and accountability, and respect for human dignity become crucial; but so is also the “right to benefit from science”, i.e. the obligation to create a “governance of opportunities” – and not just a risk governance – of scientific and technological development.

We all have a human right to enjoy the benefits of scientific progress (called henceforth the Right to Science). The right has its origins in Article 27 of the 1948 Universal Declaration of Human Rights. The existence of this right (turned into an enforceable obligation in 1976) is important for both the scientists and society. Yet, despite its potential for furthering science and human rights causes, the RtS has been neglected. It is referred to, tellingly, [S. Besson] as the “sleeping beauty” of international human rights law.

There is now renewed interest in the Right to Science, because there is a heightened sensitivity for global justice and equality and thus stronger reactions to the technological divide and innovation injustices (S. Besson).

The proposed expert workshop will develop the following :
1. Defining and interpreting the Right to Science
2. Implementing the Right to Science, with a focus on Health
3. Develop a case study : the Right to Science as applied to children in the case of rare diseases
4. As a conclusion the participants will contribute to a “Geneva Declaration on the Rights to Science”

This declaration will then be used to engage in a multistakeholder interaction, between diplomats, academics, agencies, NGOs and private sector to fully promote, in the Genève Internationale, the Right to Science. This last action will be led by GESDA (Geneva Science and Diplomacy Anticipator), a young foundation set up by the Swiss government. 


FIRST SECTION OF THE WORKSHOP : Defining the Right to Science
This section will be further developed under the scientific council of Prof Samantha Besson (Collège de France).
A legal, historical and philosophical scrutiny of the Right to Science will be conducted, a thorough legal analysis , with a historical analysis to better understand the official UN interpretations.
1) Legal analysis of this right and its complexity, because it is a right held both by scientists and by everyone else at the same time, because science itself is complex.
The questions asked will be the following :
o Why has the human right to science been neglected for so long?
o What is the power of the right to science ? How can we explain (and promote) the interest in the human right to science?
o What are the features of the human right to science that make it different from other human rights at play in the scientific context?
o What are the inherent limitations to the right ?
o What is the basic nature of the right ?
o Who owes the right to science ?
o Is the human right to science just the moral rights and duties of scientists that stem from science itself as a normative practice ?
o Does the right to science call for treating science and technology as global public goods, to be cultivated for the benefit of humanity and made accessible to all, just as with other socioeconomic rights such as education and healthcare ?
o The “unbounded” nature of science should not be too quickly defeated by the “bounded” nature of human rights. If the human right to science and hence to innovation is to be protected effectively, one should be ready to innovate institutionally in order to “unbound” their corresponding duties and responsibilities. How can we do so ?


2) Historical analysis and decoding of the “official interpretations”
The workshop will retrace the  evolution of Article 27 UDHR into Article 15 ICESCR, with the emerging 'official' thinking on the normative content by the UN. The United Nations Economic and Social Council (ECOSOC), the UN organ responsible for oversight of Article 15 only begun to exercise its extensive powers at the turn of the millennium (through the  Committee on Economic, Social and Cultural Rights, CESCR). This happened in competition-collaboration with the World Trade Organization (WTO) and its TRIPS Agreement, and with the World Intellectual Property Organization (WIPO), promoting legal intellectual property rights. ECOSOC’s interpretation is also standing alongside with that of UNESCO. The UNESCO 2009 Venice Statement on the Right to Science will be discussed, as will be the General Comment on the implementation of the Right to Science in final preparation by CESCR. Finally the contribution of the Office of the High Commissioner for Human Rights in Geneva through its special rapporteur for the Right to Science (and cultural rights) will be discussed.


3) Discussion on the multiple dimensions of the right to Science
o Right to access : access to innovations is “essential for a life with dignity”.
o The contrast with IP rights. Copyright and patents may complicate access to knowledge. A balance must, therefore, be struck among the interests of authors, inventors, and everyone else. What should the exemptions be ? Educational material, medical and public health technologies and substances, information and communication technologies, electricity, books and journal articles, genes and other biological material, seeds and agricultural technology, nanotechnology, and technology enabling development ?
o Participation : The human rights principles of inclusion and equality.
o The potential for the dual use of science and technology. The right to science implies benevolence (beneficial applications), so the right to science may relate in different ways to various applications of the same technology
o The right to science is inextricably linked to other rights related to food, health, education, development, a clean environment, social security, water, information, and labor rights.
o Science also has an intrinsic, and not just an instrumental value.
o The right impinges on “research relevance”, on designing research with the society in mind, on the participation of citizens or patients etc.

 

II. SECOND SECTION OF THE WORKSHOP : Impact and Implementation of the Right to Science
The workshop will then discuss the various implementations of the Right to Science, with a focus on health. This session will be build under the scientific advice of Prof. Bartha Knoppers (McGill)

  1. Patents and access to science (used in particular during the Doha discussion on access to HIV pharmaceuticals ). This is the best documented use of the right.
  2. Bioethics (developed in particular by UNESCO in several conventions
  3. Data Sharing : Data sharing is necessary in genomic research, and other data-intensive domains. The Global Alliance for Genomics and Health (GA4GH) has put data sharing within the framework of the right to science.
  4. Access to science and its benefits is ultimately linked to the process of "Open Science". The Right to science framework has not been used yet to promote open access and open science.
  5. Participatory and citizen science : the link of the right to science and inclusiveness and non-discrimination will be explored.
  6. “Listen to the scientists”, as requested by "Climate activists". Discussion on how listening to science is a human right and a social responsibility.
  7. The right to science and technology as engine of international cooperation and foreign policy.
  8. Dual use of emerging technologies - what does the right to science imply ?
  9. Does the right to science favor "opportunity governance" of technology, versus the principle of precaution ?

Each of the points will be briefly introduced by a scholar and discussed by the group

Illustrating the impact of the Right to Science : CASE STUDIES

The first case study will be the Genomic Commons,  building a data sharing model for global genomic research. Inspired by the mission of the Global Alliance for Genomics and Health (GA4GH) to “accelerate progress in human health by helping to establish a common framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data. Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. We lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. An international code of conduct must be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. It is time to apply the right to science to internationally collaborative genomic and clinical data sharing

Second case study: Governance of germline engineering, a highly explosive subject. Germline engineering must meet human rights standards. International human rights standards should be central to the development of germline engineering law and policies for various reasons, especially if these rights are legally binding on states. No matter how technical or specific legislation regulating germline engineering is, governments cannot depart from their international human rights obligations when developing regulatory frameworks.

Third case study : a human rights approach to low data reporting in clinical trials of psychiatric deep brain stimulation : a universally shared human rights framework, might usefully influence the structural level of global governance needed to fully respect, protect and fulfil those human rights at stake in the reporting and sharing of psychiatric DBS and other neurointervention clinical trial data. A human rights framework provides a compelling and well‐developed discourse for demanding government responsibility and accountability in ensuring access to clinical psychiatric DBS trial information, transparency initiatives, and corrective measures. The progressive duties underlying human rights might be a more effective approach by which governments, industry, funders and researchers might be incentivized to report clinical trial data.

THIRD SECTION OF THE WORKSHOP : children & rare diseases
This session will be prepared and moderated by Jean-Dominique Vassalli

The United Nations Convention on the Rights of the Child says in Art 24 “States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health.

Children, respectively the case of rare diseases provide, a perfect example for defining and implementing the rights to science approach to a pressing scientific and societal problem. This workshop will make the case for this framework.

The very nature of their low frequency means that research into rare diseases can be particularly challenging. International collaboration is therefore essential to avoid duplication of effort, missed opportunities and unnecessary multiplication of unlinked, siloed datasets. To date, however, concrete benefits to patients from personalised medicine approaches have been limited by the lack of data sharing and lack of interoperability between individual efforts. The right to science should be a powerful tool to build this common good of data and treatments.

Moreover, the case of rare diseases resonates with the human right to science extensively. Sharing, rare diseases are genetic, and genes are shared by definition; Common good : the genome is a health capital; Access : access to whole genome sequencing (the best available diagnostic) becomes a right; access to treatments also. Inclusiveness : we are all parents, and this is the base for the construction of a common good in a synergy between citizens (parents) and institutions; conceive science in a way that parents can play their role. The right to highest attainable standard of health questions also our academic institutions ? Do they promote the best science organization for this goal ?

 

LAST SECTION of the WORKSHOP : the Geneva Declaration of Rights to Science

In the last part of the workshop, the participants will contribute to the writing of a declaration/manifesto  of rights to science, with the goal to greatly improve the implementation of the right to science. The declaration will be published, and circulated for a multistakeholder conversation, notably in the Genève Internationale. Key players are science organizations, UN agencies, NGOs, regulators, the private sector. The stakeholders are assembled to discuss, or hopefully approve and implement the manifesto.

The publication of the manifesto does not preclude the publication of the proceedings of the workshop.