A/HRC/20/26
rights to freedom of opinion and expression, to information and to association,51 must be
taken into consideration.
50.
More specifically, the Declaration on the Use of Scientific and Technological
Progress stresses the importance of ensuring that the results of scientific and technological
developments are used for the purpose of human rights and freedoms in accordance with
the Charter of the United Nations. Noting that scientific and technological developments
can give rise to social problems, as well as threaten the human rights and fundamental
freedoms of the individual, States are called upon to protect all strata of the population both
socially and materially, from possible harmful effects of the misuse of scientific and
technological developments”.52 In this regard, the Special Rapporteur stresses the
importance of the precautionary principle: “in the absence of scientific consensus, caution
and the avoidance of steps are required in case an action or policy might cause severe or
irreversible harm to the public or the environment,” and of the obligations of states to
“monitor the potential harmful effects of science and technology, to effectively react to the
findings and inform the public in a transparent way”.53
51.
Conducting research in a socially responsible manner in accordance with ethical
standards is emphasized in article 14 of the Universal Declaration on the Human Genome
and Human Rights. Rights and freedoms that may be most threatened by the conduct of
scientific research, especially those involving exposure or contact and social science
research eliciting personal data, are the rights to physical and intellectual integrity, liberty
and security, to privacy, and to seek, receive and impart information. 54 The prohibition to
submit a person to medical and scientific experimentation without his or her free consent
must be specifically underlined.55 States responses to the questionnaire describe various
measures adopted to address these concerns. 56
52.
Marginalized populations with limited financial or political power and scientific
awareness run a greater risk of violations as human research subjects. 57 In its general
comment No. 20, the Human Rights Committee elucidated that special measures are needed
to protect persons incapable of giving their consent and vulnerable populations, such as
prison inmates. The Council of Europe Convention on Human Rights and Biomedicine also
contains important provisions on the issue of consent. 58 Safeguarding the rights of research
subjects must include benefit-sharing and providing remedies in the event of abuse. The
UNESCO Universal Declaration on Human Rights and Bioethics and the development of
National Bioethics Committees are examples of legal and institutional frameworks for the
protection of research subjects.
53.
One way to ensure the respect of ethical standards in scientific research is through
codes of ethical standards developed and maintained by discipline-specific professional
organizations. Currently, however, these codes are rarely based explicitly on human rights
standards; for example, the codes of only 11 of the 261 organizations affiliated with the
world’s largest multidisciplinary scientific membership organization, the American
Association for the Advancement of Science, refer to human rights. Several focus on
51
52
53
54
55
56
57
58
14
E/C.12/GC/21, para. 19.
See also Venice Statement, para. 24.
Venice Statement, paras. 12 (f) and 16 (c).
See for example the Declaration on the Use of Science, art. 6.
International Covenant on Civil and Political Rights, art. 7.
See in particular the responses of Canada, Germany, Mauritius and Spain.
See for example “Ethically Impossible”: STD Research in Guatemala from 1946 to 1948, Presidential
Commission for the Study of Bioethical Issues, September 2011. Available from
http://bioethics.gov/cms/sites/default/files/Ethically-Impossible_PCSBI.pdf.
Chap. II.