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Autism, Ethics and Society

Conference 28th June, 2010

UCL
Anatomy J.Z. Young Lecture Theatre
Gower Street
London
WC1E 6BT

Sponsored by:
Autistica
Institute of Education Centre for Research in Autism and Education
UCL Centre for Philosophy, Justice and Health

Autism is a common, lifelong neurodevelopmental condition that has dramatically captured attention in the last decade. It has become the focus of public concern, government action, and has provoked campaigns from an extensive range of charities and advocacy groups. This far-reaching action is partly a consequence of the profound impact of autism but discoveries in genetics and neuroscience have further intensified this public scrutiny.

These new discoveries are transforming our understanding of autism, including its causes and its consequences, and have excited much attention, even prompting media speculation about a long-term "cure". Yet some of these discoveries have provoked unease amongst some people with autism and their families, ethicists and social commentators. These groups fear that the new scientific discoveries may not be effectively translated in to benefits for the autism community. Some even fear that some discoveries could further stigmatise those with autism and ensure that scarce public resources are directed towards long-term removal of the condition rather than immediate amelioration of the circumstances in which those with autism live.

Responding to these tensions, Professor Simon Baron-Cohen of the University of Cambridge has recently called for an open debate on the wider implications of the new scientific research into autism. This day-workshop at University College London on 28th June 2010 aims to initiate that debate by drawing together some of the world-leaders in autism science along with participants from neuroscience, ethics, public policy, and active members of the autism community.

The workshop will be structured in four sessions. Each will be opened by brief (15-minute) papers from academics, members of key user groups (representing the full range of the autism spectrum) and practitioners in public policy, and followed by focused but informal discussion from a diverse range of invited participants. The sessions will ask:

1. What specific concerns are those outside the scientific community likely to have about the new scientific discoveries in autism?

2. How should society respond to the potential discoveries in the genetics of autism? Specifically, should research efforts focus on "curing" or “preventing” autism or on means of ameliorating the difficulties that confront those living with autism?

3. How should new scientific discoveries inform public policy, especially in light of the new Autism Act (2009) and Adult Autism Strategy?

4. How can people with autism be more directly involved in both the genesis of scientific research and in shaping its social implications?

Conference Programme

Each of the sessions features speakers from a number of different backgrounds and points of view. It is our aim to enable a wide-ranging, informal and open-minded discussion between speakers and other invited participants.

9.30 Registration and Coffee

10.00 Session 1. Autism, science and society: debates and dialogues
This session will focus on the specific ethical concerns those outside the scientific community are likely to have about the new scientific discoveries in autism. It will set the agenda for the rest of the day’s deliberations.

Discussion launched by:
Professor Jonathan Wolff, Centre for Philosophy, Justice and Health, University College London
Download Recording of Jonathan Wolff Talk

Dr Wendy Lawson, autism activist
Download Wendy Lawson Presentation
Download Recording of Wendy Lawson Talk

Dr Marc Stears, Department of Politics and International Relations, University of Oxford
Download Recording of Marc Stears' Talk
Download Marc Stears' Presentation

Chaired by: Dr Liz Pellicano, Centre for Research in Autism and Education, Institute of Education, University of London

11.30 Session 2. The new translational genetics and its ethical challenges
This session will focus on the ways in which society should respond to the potential discoveries in the genetics of autism. Specifically, it will ask whether research efforts should focus on "curing" or “preventing” autism or on means of ameliorating the difficulties that confront those living with autism.

Discussion launched by:
Professor Simon Baron-Cohen, Autism Research Centre, University of Cambridge
Download Simon Baron-Cohen's Presentation
Download Recording of Simon Baron-Cohen's Talk

Mr Sandy Starr, Progress Educational Trust
Download Recording of Sandy Starr's Talk
Link to Spectrum of Opinion Website

Prof Emily Simonoff, Institute of Psychiatry
Download Emily Simonoff's Presentation
Download Recording of Emily Simonoff's Talk

Chaired by: Professor Francesca Happé, MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry

1.00 Lunch

2.00 Session 3. Implications: genetics, social policy and education
This session will concentrate on how the new scientific discoveries can inform the priorities of public policy, like the innovations in recent legislation (the Autism Act 2009). It will ask in particular how the emerging scientific developments can be best translated so as to bring real benefits to the lives of individuals with autism and their families.

Discussion launched by:
Ms Virginia Bovell, autism, ethics and education specialist
Download Recording of Virginia Bovell Talk

Professor Tony Charman, Centre for Research in Autism and Education, Institute of Education
Download Tony Charman's Presentation
Download Recording of Tony Charman's Talk

Ros Blackburn, speaker with autism

Professor Richard Ashcroft, School of Law, Queen Mary, University of London
Download Recording of Richard Ashcroft Talk

Chaired by: Dr Sarah Parsons, Autism Centre for Education and Research (ACER), School of Education, University of Birmingham

3.30 Tea

4.00 Session 4. Futures: Participation, voice and influence
This closing session will ask how people with autism can be more directly involved in both the genesis of scientific research and in shaping its social implications than they are at present. In particular, attention will be given to questions concerning participatory input from individuals with severe autism who may be less able to have their voices heard.

Discussion launched by:
Mr Larry Arnold, autism activist
Download Larry Arnold Presentation
Download Recording of Larry Arnold's Talk

Professor Laurent Mottron, Hopital Riviere-des-Prairies, Montreal
Download Recording of Laurent Mottron Talk

Dr Dinah Murray, Autreach IT
Download Dinah Murray's Presentation
Download Recording of Dinah Murray's Talk

Chaired by: Dr Sarah Edwards, Centre for Philosophy, Justice and Health, University College London

5.30 Close

To register, or for further enquiries, please email Dr Liz Pellicano