A/HRC/55/44 women are not excluded, their scientific contributions can remain invisible or diminished and their position not recognized. 39. In addition, participation in scientific endeavours should not be affected by geographical considerations. In a globalized scientific landscape, participation is restricted at times for non-Western researchers, who experience prejudice and for whom barriers to access to scientific publications have been replaced by barriers to publishing. Furthermore, much research is conducted in English.52 40. The term “citizen science” should not be restricted to nationals. It is an open concept encompassing all relevant people and communities, including non-citizens and across countries. That is why such terms as public, community and participatory science may be preferable. 41. The collective element of the right to participate in science must be recognized. Each individual participates and collectively shapes scientific process and shares in its benefits and applications. Scientific endeavour as a collective endeavour includes setting priorities, conditions and possible limits for the use of science as a common good. 42. That collective dimension must be distinguished from the collective right to participate in science that Indigenous Peoples must enjoy as part of their right to self-determination, with full respect for their right to free, prior and informed consent. C. Various layers of participation 43. The right to participate in science includes many dimensions, including, for example, the right to scientific literacy, the right to access to the scientific professions, the right to contribute to scientific progress and the right to participate in policy decisions relating to science. 53 The Special Rapporteur recalls, in that respect, that diverse provisions of international law, particularly articles 19 and 25 of the International Covenant on Civil and Political Rights and articles 13 and 15 of the International Covenant on Economic, Social and Cultural Rights, including article 15 (3) on respecting the freedom indispensable for scientific research and creative activity, ground such participation. 1. Participation in scientific endeavour 44. Modalities of participation may differ for different types of participants in different scientific fields. 45. For example, communities affected by a particular disease or condition have a right to participate in research as more than just clinical trial participants or passive beneficiaries of medical advancements. They have the right to be involved at every level of decisionmaking, to be given equal credibility in forums as other participants and to receive full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives. People living with a disease must have an equal voice, if they so choose, at each stage of the research process, from setting the overall scientific agenda, to shaping the questions studied in key trials, to overseeing how people are treated in research, to informing the translation of research results into policy, to finally ensuring that people in need could benefit from new diagnostic, therapeutic and prevention tools. Such elements are now included in scientific guidelines, 54 which should be prioritized and be made widely available. 52 53 54 GE.24-01813 See contribution from the International Federation of Library Associations and Institutions. “The right to participate in scientific progress”, in Cesare Romano and Andrea Boggio, The Human Right to Science. History, Development, and Normative Content (Oxford University Press, 2024) (forthcoming). See contribution from the Treatment Action Group. See also the Denver Principles and the guidelines for tuberculosis and HIV research included in the suite of “Good participatory practice guidelines”, available at https://avac.org/project/good-participatory-practice. 11