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.

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