A/HRC/55/44 34. Participation also enables access. It makes science familiar rather than hostile and foreign and brings people closer to it. It is a prerequisite for access to the benefits of scientific progress, ensuring that it is applicable and relevant to specific groups of people. The lack of recognition, for example, of Indigenous ancestral knowledge makes Indigenous women sceptical of non-Indigenous health systems and contributes to their poor access to culturally appropriate sexual and reproductive health services. 44 Another example is the participation of pregnant women, children and people with disabilities or living with HIV in research, guaranteeing their access to specific medical treatment. Without fostering participation, States cannot live up to the duty of ensuring non-discrimination in access to science and its benefits.45 B. Who participates? 35. Participation should be understood to include the activities of professional scientists and the meaningful involvement of non-scientists or non-professionals. The Committee on Economic, Social and Cultural Rights has criticized the rigid distinction between the scientist who produces science and the general population, entitled only to enjoy the benefits derived from research conducted by scientists. 46 The right to participate in science as a human right means that all individuals, without discrimination, are rights holders, however with varying modalities of participation. Science is certainly a field in which expertise should prevail and experts must be guaranteed participation and space to make their opinions heard. The circle of experts who have enhanced participation, however, is not as exclusive as it used to be and experts are not the only ones with the right to participate in science. 36. In global health research, the most common term used to refer to the participation of non-scientists is “affected communities”. The rich tradition of community participation in global health research evident today dates back to the start of the movement to combat HIV/AIDS, when people living with HIV and dying of AIDS fought for equal footing in HIV/AIDS research.47 The right of people affected by a disease to participate in all decisions concerning their lives has been a core tenet of global health research since the formulation of the Denver Principles in 1983. Rejecting the passivity of labels such as “victims”, “patients” and “subjects”, a vision of self-determination, autonomy and empowerment reshaped the ways in which global health research was organized and conducted.48 37. Other actors and stakeholders also have different roles to play in science: researchers, scientists and scholars, leaders at research institutions, educators, academia, members of professional societies, students and young researcher organizations, information specialists, librarians, museum professionals, users and the public at large, including communities, Indigenous knowledge holders and civil society organizations, computer scientists, software developers, coders, creatives, innovators, engineers, citizen scientists, legal scholars, legislators, magistrates and civil servants, publishers, editors, technical staff, research funders and philanthropists, policymakers, learned societies, practitioners from professional fields and representatives of the science, technology and innovation-related private sector.49 38. Their participation must be guaranteed regardless of nationality, ethnicity, gender, language, age, discipline, socioeconomic background, funding basis and career stage or any other grounds and particular attention should be paid to those suffering from structural discrimination, including Indigenous Peoples and minorities, migrants, persons living in poverty, persons with disabilities or living with illness and women. 50 For example, Mexico is the only country in which 30 per cent of scientific projects are led by women.51 Even when 44 45 46 47 48 49 50 51 10 See contribution from the Center for Reproductive Rights. See contribution from the Treatment Action Group. General comment No. 25 (2020), para. 9. See contribution from the Treatment Action Group. Ibid., para. 7. See also Advisory Committee of the People with AIDS, the Denver Principles (1983). Recommendation on Open Science, para. 12. See contribution from Coming Out. See contribution from Mexico (in Spanish). GE.24-01813

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