A/HRC/15/26 54. Consent, together with the relevant data, may be freely withdrawn at any time. Further, the Convention states that everyone has the right to respect for their private life in relation to information about his or her health.4 A few restrictions to rights and protective provisions are permitted to advance collective interests (public safety, the prevention of crime, and the protection of public health) or the rights or freedoms of others.5 To be admissible, restrictions must be prescribed by law and be necessary in a democratic society for the protection of the collective interest in question or for the protection of individual interests.6 By definition, given its subject matter (interventions in the health field), the Oviedo Convention does not address forensic applications. However, it can provide guidance in cases of consensual forensic genetic testing, such as identifying disaster victims. 55. The United Nations Educational, Scientific and Cultural Organization (UNESCO) Universal Declaration on the Human Genome and Human Rights (1997) recognizes the benefits that research on the human genome adds to humankind as a whole, and underlines that such research should fully respect human dignity, freedom and human rights. It addresses States and seeks to foster international cooperation with developing countries in disseminating scientific knowledge on the human genome, human diversity and genetic research. The Declaration is concerned with genetic treatment, diagnosis and research, with an accent on respecting human dignity through a requirement of consent. The declaration stipulates that individuals have the right to decide whether or not to be informed of the results of genetic examination and the resulting consequences, but it is silent on the right to withdraw personal data once it has been consensually provided. In addition, the Declaration mentions that genetic data that can be associated with an identifiable person must be held confidential according to the law.7 Limitations on consent and confidentiality can be imposed only to protect human rights and fundamental freedoms and must be prescribed by law for compelling reasons, consistent with public international law and international human rights law.8 56. In response to fears that human genetic data will be used for purposes contrary to human rights and freedoms, the UNESCO International Declaration on Human Genetic Data (2003) stipulates in its preamble that the interests and welfare of the individual should have priority over the rights and interests of society and research. It sets out a number of rules for the collection, use and storage of human genetic data. It covers, among other issues, informed consent in genetics; confidentiality of genetic data; genetic discrimination; anonymity of personal genetic information; population-based genetic studies; the right not to know one’s genetic make-up; international solidarity in genetic research, and benefit sharing. The Declaration clearly states that it aims to ensure respect for human dignity and the protection of human rights and fundamental freedoms in the collection, processing, use and storage of human genetic data. 57. Lastly, the Universal Declaration on Bioethics and Human Rights (2005) was met with mixed reviews.9 It seeks to provide a universal framework of principles and procedures in the field of bioethics.10 It addresses ethical issues related to medicine, life sciences and 4 5 6 7 8 9 10 14 Article 10. Article 26. Explanatory report, para.159. Article 7. Article 9. Adele Langlois, “The UNESCO Universal Declaration on Bioethics and Human Rights: perspectives from Kenya and South Africa”, Health Care Analysis, vol. 16, No. 1 (March 2008). There has been some controversy in defining bioethics, so its exact definition was left out in the final version of the Declaration. Broadly it can be viewed as “regulation of biomedical research”.