The goal of this Woking Paper is to offer an approach to genetic discrimination based on international law. Many studies have been written on the topic of genetic discrimination, either from a comparative law perspective or from a utilitarian perspective of medical research development. Others have tackled the problem from the perspective of social justice. Although all of these contain elements of international law, they do not provide a comprehensive overview: hence the need for this study.
The relationship between new technologies and the protection of human rights is complicated. In part, this is because history shapes that relationship: the legal regime of genetic discrimination is influenced by the history of genetic discrimination, specifically its use during the genocide and crimes against humanity during World War II. More controversially, it might also be argued that this history is also the reason why the legal regime relating to genetic discrimination should be analysed more thoroughly than other types of discrimination that may arise from other uses of technology.
Perhaps this can be put another way: imagine if the science underpinning eugenic thought had been right—what would our critique be then? If we could not summarily dismiss eugenics as hegemony based on ignorance and as instrumentalist science, what arguments would we marshal to defeat its programme? What principled distinctions can we make between their institutionalization efforts and ours? What difference is there between their pedigree counselling and our genetic counselling? What distinction can be drawn between their race betterment agendas and our hope for alleviation of suffering through genetic therapy? Such questions are not posed to suggest that there is no difference. Rather, they are posed in order to remind us that we must consciously and deliberately respond to eugenics not only so that we avoid repeating the mistakes of the past, but also so that unwarranted fear and guilt do not render us incapable of properly appropriating and incorporating genetic information into our social structure, our policies, and our jurisprudence.
Main questions
The main questions asked in this paper are:
- What is the meaning of genetic discrimination?
- How can efficient legislation on privacy protection prevent genetic discrimination?
- What is the relationship between international law and domestic law in fields such as insurance, employment and criminal investigation and what is the best way to protect individuals?
- How are various groups, such as women, indigenous people and persons with disabilities, affected by or vulnerable to genetic discrimination?
Part 1
In Part 1, the main texts in international law will be outlined. Particular emphasis will be placed on the 1997 Universal Declaration on the Human Genome and Human Rights (UDHGHR), the first international instrument in this field. This will lead into an examination of the controversies surrounding the definition of genetic discrimination. By contrast with those who argue that it is not necessary to single out this type of discrimination, I will suggest that it should be legislated for separately within the general human rights framework. Arguments referring to the recent eugenic past, as well as the fundamental principle of human dignity and the rights ‘of everyone to enjoy the benefits of scientific progress and its applications, provide further support for adopting an individual approach to this type of discrimination.
Part 2
The second part analyses the protection of genetic privacy. The 2003 International Declaration on Human Genetic Data (IDHGD) of UNESCO, which has been described as ‘a sequel’ to the UDHGHR, provides the main international legal framework in this regard. The most sensitive issues arise when consent to genetic data use is involved. Express consent is stipulated by the IDHGD but, as Hélène Boussard explains in her chapter in this volume, there are still many issues which remain unclear, especially as regards the relationship between individual consent and the interests of third parties, and also collective consent.
Part 3
Part 3 deals with how international law against genetic discrimination becomes operational in domestic law in the fields of employment, insurance and criminal investigation. In accordance with Article 23 of the IDHGD,‘[s]tates should take all appropriate measures, whether of a legislative, administrative or other character, to give effect to the principles set out in [the] Declaration, in accordance with the international law of human rights’. To date, the European tendency has been to prohibit the use of genetic data in employment and insurance; by contrast, in the US, state legislation provides a regulatory approach with variable definitions and degrees of prohibition of genetic discrimination. Criminal investigation is another field which raises concerns about possible discrimination. DNA databases are a valuable instrument for criminal investigations and bring major benefits. Yet, as emphasized by the IDHGD, certain practices bring up rights concerns, including: retaining full DNA samples, rather than just the DNA profiles used for identification; retaining people’s records on the database without consideration of the nature of their offence and also including those who have been arrested but not charged, or those who have been acquitted; and using the database for genetic research without consent.
Part 4
The last part deals with the issue of vulnerable groups, specifically, women, children, indigenous peoples and disabled persons.
