A/HRC/55/44 46. The specific example of community advisory boards by means of which affected communities participate in medical research can be set as a model. Composed of people living with and affected by tuberculosis, HIV/AIDS or other diseases, they act in an advisory capacity to scientists, funders and pharmaceutical companies conducting clinical trials or public health studies. Beyond facilitating the exchange of information between scientists and communities, they actively intervene in the research itself. They can propose studies, object to the exclusion of certain populations from studies, question the utility of specific procedures and offer views on whether the overall research agenda is moving in a direction that will meet the needs of people.55 47. There are many examples of public, community or participatory science in many fields, for instance using reverse engineering to ensure access to knowledge and developing capacities to repair or build machines or providing access to and creating data to defend rights.56 It also can take the form of public participation in the scientific research process. Involvement can include helping to define research questions, gathering or contributing data and validating findings. It contributes to democratizing knowledge, fighting misinformation and disinformation, addressing existing systemic inequalities and enclosures of wealth, knowledge and power and guiding scientific work towards solving problems of social importance, acting as a powerful accountability tool to address State inaction or nontransparency, as reported, for example, in China and the United States. 57 48. The Special Rapporteur welcomes the information on the promotion of public, community or participatory science by States, for example in Argentina, 58 Germany59 and Malaysia. 60 In Africa, “citizen science” is developing and generating knowledge that responds to societal needs and informs policymakers on such issues as air pollution, malaria prevention and biodiversity protection and management.61 2. Participation in decision-making 49. Participation in the scientific endeavour and in decision-making overlap, as shown in examples in the previous section. As mentioned in the guidelines for States on the effective implementation of the right to participate in public affairs, participation may occur through various modalities. The guidelines should be taken fully into consideration, keeping in mind specific elements pertaining to scientific issues. 50. In particular, in its general comment No. 25 (2020), the Committee on Economic, Social and Cultural Rights recognized the right of every person to take part in in decisions concerning the direction of scientific progress. 62 It specified that, with due respect to scientific freedom, some decisions concerning the orientation of scientific research or the adoption of certain technical advancements should be subjected to public scrutiny and citizen participation. As far as possible, scientific or technological policies should be established through participatory and transparent processes and should be implemented with accompanying transparency and accountability mechanisms.63 51. The Committee also considered that States should endeavour to align their policies with the best scientific evidence available, 64 pointing out the right to scientifically based decision-making and to socially responsible science. The Recommendation on Science and 55 56 57 58 59 60 61 62 63 64 12 See contribution from the Treatment Action Group. See Paul-Olivier Dehaye, co-founder of PersonalData.IO, “Citizen science, open science and open innovation; the right to participate in science; the right to seek, receive and impart information”, presentation at the Social Forum 2023, Geneva, 3 November 2023, video, 00:43:00, available at https://media.un.org/en/asset/k15/k154t3ap8w?kalturaStartTime=3929. See contribution from the Treatment Action Group. See contribution from the Grupo de Estudios sobre Derechos Culturales de Argentina (in Spanish). See contribution from Lutz Möller, German Commission for UNESCO. See contribution from Malaysia. See contribution from Maat for Peace, Development and Human Rights Association. General comment No. 25 (2020), para. 10. Ibid., para. 55. Ibid., para. 54. GE.24-01813