“Genetic Discrimination – A Many Faceted Challenge”

Friday 11 May 2012

Sheffield Institute of Biotechnology Law and Ethics
School of Law
University of Sheffield

Genetic discrimination has been on the political agenda in the UK since the early 1990s. At first, many of the fears were for the future, rather than concerns for that time. In 2012, things have moved on. Sequencing of the human genome has been completed, and gene sequencing is getting cheaper to do so as each month passes. In the near future this technology will be within reach of everyone in the UK. On the one hand, this is extremely liberating: I could find out important information about myself and the path that my future might take, which could help me to make choices about the way I live my life. However, with great knowledge comes great responsibility. What was a fear for the future in 1990, is now a concern in the present. There are many ways in which information about a person's genetic makeup could be used: for insurance, employment, immigration, or in the criminal justice system. Not all of these are for the benefit of the individual. When we talk about genetic discrimination we talk about a problem that needs a solution. We talk about how it could be dealt with, on what level, and by which type of organisation. But there is a prior question – or several prior questions – and it is these which this workshop will address:

  • What do we mean when we talk about genetic discrimination?
  • What is it that we are worried about when we talk about addressing the problem of genetic discrimination?
  • Are there different problems hidden within the concept of genetic discrimination?
  • Which regulatory instruments and approaches are feasible/desirable for tackling genetic discrimination?
  • Do different problems need to be tackled in different ways?

The workshop will address these sorts of questions in an attempt to highlight the many facets of the concept of genetic discrimination. It will build on the issues addressed by the Human Genetics Commission at the seminar “Understanding Genetic Discrimination” held in 2010 in association with the AHRC.

Draft Programme

1.30-2.00

Arrival and registration

2.00-2.10

Welcome

2.10-3.00

Privacy, Confidentiality and Genetic Information Professor Leslie Francis,
University of Utah
Q&A

3.00-3.45

Last to Know: Why You might be the Person Least Entitled to Information about your own Genome
Dr Iain Brassington, University of Manchester
Q&A

3.45-4.30

Afternoon Tea and Cakes

4.30-5.15

Genetic Defences: Should a Common Genetic Variant Affect Legal Responsibility?
Dr Mairi Levitt, Lancaster University
Q&A

5.15-5.55

Discussion – The Many Facets of Genetic Discrimination

5.55-6.00

Closing Remarks

Drinks and dinner will be at The Showroom from 6.30pm.