What do genetics and human rights have to do with one another?
February 25 2009
**ATTENDEES MUST PRE-REGISTER FOR THIS EVENT** To register - please email Angela.McEwan@ed.ac.uk or call 0131 650 9113.
McEwan Hall Reception Room, Bristo Square, Edinburgh University - (Tea and Coffee will be available)
The McEwan Hall Reception Room is located in the Teviot Building on Teviot Place. Acess to the room is through the main archway entrance on Teviot Place, doorway no. 2 is second on the left. The reception room is the only room at the top of the stairs on the right. A map with the building marked can be found at:
Organised by: Joint Seminar between ESRC Innogen Centre & AHRC SCRIPT Centres at Edinburgh University
"What do genetics and human rights have to do with one another?"
In recent years, international lawyers and diplomats have crafted a number of regional and global instruments proposing to regulate and delimit the field of human biotechnology and genetic medicine. The central tendency in this developing legal framework is to articulate human rights norms in a soft law framework, nudging us in the direction of something more substantive. Key instances of this evolving framework include Declarations of UNESCO on human genetic databases and on bioethics, and the Oviedo Convention and optional protocols of the Council of Europe. These developments have attracted heated criticism from the bioethics community internationally: they are seen as weak, or overly restrictive (or indeed both at the same
time!) However, much of this critique is frankly ideological, rather than addressing with any care the philosophical and ethical presuppositions of the international legal regulation of genetics. My current work in progress is to study the interrelations between bioethics and human rights. A central question here is how far international human rights require commitment to any thesis about constitutive elements of humanity, and in particular the biological constitution of humans. As such, we need to understand what genetics has to say to human rights, just as much as we need to understand what
human rights may prescribe to genetic researchers and technologists.
It is not enough to dismiss human rights as politics by other means, metaphysically bankrupt, morally blunt-edged, and critically silent on crucial bioethical issues either in theory or in adjudication. These criticisms have much merit. But they miss the practical importance and normative force of human rights. Therefore, while bioethicists may not like human rights or human rights law, we need to engage with its real potential. Part of doing that is to recognise what its limits are in engaging with genetics: what it can and cannot do. I will explore these themes in dialogue with Graeme Laurie.