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