Genomic research is an expanding and subversive field, leaking into various others, from environmental protection to food production to healthcare delivery, and in doing so, it is reshaping our relationship with them. The international community has issued various declaratory instruments aimed at the human genome and genomic research. These soft law instruments stress the special nature of genomics and our genetic heritage, and attempt to set limits on our activities with respect to same, as informed by the human rights paradigm. This paper examines the primary thrust and, more importantly, the joint value position of the Universal Declaration on the Human Genome and Human Rights and the Universal Declaration on Bioethics and Human Rights, concluding that, though important legal instruments from the human rights paradigm, these instruments, or rather the values contained therein, must find a more influential hard law voice and a broader policy environment.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
Competing interests: None declared.
↵i Dignity also features prominently in the Universal Declaration of Human Rights (1948), the European Convention on Human Rights (1950) and judicial interpretations of same.
↵ii A right enshrined in the International Covenant on Economic, Social and Cultural Rights (1966), and the UNESCO Recommendation on the Status of Scientific Researchers (1974), and supported in the European context by Huvig vs France (1990) 12 EHRR 528 (ECHR), and Niemietz vs Germany (1992) 16 EHRR 97 (ECHR).
↵iii Article 13, UDHG, notes the responsibilities of public and private policy-makers. Articles 1(2) and 2(b), UDB, note that, although addressed to states, the UDB is intended to guide individuals, groups, communities, institutions and corporations, public and private. Article 14(1), UDB, notes the shared responsibility of all sectors of society to promote health and social development. Article 23(2), UDB, encourages the participation of numerous stakeholders in bioethics development, and article 24(3), UDB, notes that individuals, families, groups, communities and states must all promote solidarity. Both instruments caution that they should not be interpreted by individuals, states or groups in such a way as to condone breaches of human rights, dignity or stated principles: see article 25, UDHG and article 28, UDB.
↵iv Also note article 11, UDHG, which goes on to claim that human reproductive cloning is contrary to human dignity, though it does not explain how or why.
↵v From a jurisprudential point of view, note that the European Court of Human Rights has rejected protecting “future generations” (embryos) at the expense of existing rights-holders (see Vo vs France,  ECHR 326 (Grand Chamber)) and rejected protecting future generations and the environment from the dangers of nuclear power absent a specific and imminent danger (see Athanassoglou et al vs Switzerland,  ECHR 159 (Grand Chamber)). However, the Philippine Supreme Court has allowed a class action on behalf of named plaintiffs and future generations in the context of preservation of public forestland (see Oposa et al vs Secretary of the Department of Environment & Natural Resources (1993), 224 SCRA 792 (en banc)).
↵vi The scientific support for human unity includes evidence that there is no biological basis for the concept of race (certainly as we understand and deploy the term), a fact which has been cited as a significant contribution to the elevation of anti-discrimination provisions as undisputed universal norms at international law.36
↵vii The difficulties presented by the term in juridical settings is exemplified by Vo vs France,  ECHR 326 (Grand Chamber), wherein the court appeared not to include a 20+ week foetus in that term, and, more recently, by the Korean Supreme Court which ruled that a 42+ week foetus was not a human.41
↵viii Both instruments refer to UN Convention on the Elimination of All Forms of Racial Discrimination (1965), UN Convention on the Elimination of All Forms of Discrimination Against Women (1979), and UN Convention on the Rights of the Child (1989). The 1965 convention addresses sanctity in its preamble and article 5(b), which articulates a right to security of the person and protection against violence and bodily harm: see http://www.unhchr.ch/html/menu3/b/d_icerd.htm (accessed 19 Sep 2008). The 1979 convention addresses sanctity in its preamble and articles 3, 5 and 6: see http://www.un.org/womenwatch/daw/cedaw/text/econvention.htm (accessed 18 Aug 2008). The 1989 convention addresses sanctity in its preamble and articles 2, 3, 6, 9 and 11. Article 6 articulates a right to life and directs states to maximise the survivability and potential of the child, and article 9 addresses neglect and abuse: see http://www.unhchr.ch/html/menu3/b/k2crc.htm (accessed 18 Aug 2008). In addition, the UDHG refers to the UN Convention on the Prevention and Punishment of the Crime of Genocide (1948) (see http://www.unhchr.ch/html/menu3/b/p_genoci.htm (accessed 18 Aug 2008)), and the Convention on the Prohibition of the Development, Production and Stockpiling of Bacteriological (Biological) and Toxin Weapons and on their Destruction (1971) (see http://www.opbw.org/convention/documents/btwctext.pdf (accessed 18 Aug 2008).
↵ix Article 4 of the first instrument states that the human genome in its natural state (ie, in its natural environment, being the human body) shall not give rise to financial gains. Article 15(2) of the latter instrument states that benefits (broadly defined) should not constitute improper inducements to participate in research. Presumably, these (partial) bans on commercialisation are based on the idea that money could lead to devaluing the person and endangering life. Given the ability of third parties to gain financially from the human genome through the patenting of genes and gene sequences, the ethical consistency of prohibiting individual gene originators from also gaining can be questioned. Indeed, the IBC subsequently issued an Advice alleging moral grounds for excluding the human genome from patentability.42
↵x For example, within the UDB, note the conviction that the interests of the individual should have priority (article 3(2)), on the one hand, and the need to promote the interests of future generations and protect public health (a decidedly non-individualistic framework for decision-making)(articles 2(g) and 27), on the other, and the difficulty of reconciling them.