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From: Penni <[log in to unmask]>
To: "[log in to unmask]"
<[log in to unmask]>
Subject: Disability Wales Annual Conference
Date sent: Wed, 11 Oct 2000 12:19:42 +0100
Disability Wales * Anabledd Cymru
promoting the rights, equality, inclusion and support of disabled people
in Wales
hyrwyddo hawliau, cydraddoldeb, cynhwysedd a chefnogaeth i bobl anabl
yng Nghymru
Genes'R'Us
- the bioethics debate and the disability movement in Wales
to be held at the Cardiff International Arena on Wednesday 1 November
2000
Recent research into the human genome - the genetic code that governs
all our lives - has resulted in enormous leaps in scientific
development. Stem cell cloning may lead to replacement body parts on
demand - including new spinal cords. Gene replacement therapy may lead
to a cure for conditions like cystic fibrosis. Genetic screening can
help parents to detect impairments early and prepare for them, or
perhaps to identify susceptibility to disease and avoid inappropriate
lifestyles. All good news? Not quite.
Press coverage of the human genome project referred to the "eradication"
of disabling conditions by treatment or by screening. Diversion of huge
sums of cash into genetic treatment research means spending less on
changing policies, practice and environmental barriers. Gene replacement
may carry huge risks for future generations. Genetic screening opens up
abortion choices to parents based on possible future conditions, with
parents being actively encouraged to terminate babies with "faulty"
genes. If they don't, then they may be denied essential future services.
Certainly the insurance industry is already pushing to use screening
information to deny policies to people who might carry gene markers for
specific conditions and there have been statements from senior medical
practitioners that it will be a "sin" to give birth to a disabled child
in the future.
The professional and political debates emphasise eugenic arguments based
on "quality of life" and cost to the state (not to mention profit
margins for research companies). The one voice that is being lost is
ours - disabled people. There is an urgent need to develop the debate in
Wales so that we can make our own minds up and challenge the idea that
termination or genetic treatment are always legitimate responses to
predicted impairment. We need to understand what is possible, to tease
out the ethical and practical issues for disabled people, and to develop
our own ideas on how this scientific juggernaut should be directed and
governed.
Like it or not, the genetic genie is well and truly out of the bottle.
The issue is no longer whether this should happen, but how. We need to
clarify our position on genetic treatment and screening issues and make
sure that the agenda is not completely dominated by medical and
commercial interests. Our genes make us who we are. Genes literally are
us, and we have every right to participate in the debate. This
conference will explore some of the urgent issues that we need to
address now, and those that will affect future generations of disabled
people.
Timetable
10.30 Introduction: Howard John; Director, Disability Wales
10.45 What is possible - an introduction to current developments in
genetic screening and treatment:
Dr Angus Clarke, Institute of Medical Genetics,
University of Wales College of Medicine
11.10 Issues: choices and rights - for parents and disabled people:
Bill Albert, BCODP International Committee and Human
Genetics Commission
11.30 Workshops: Kill or Cure?
* Genetic Screening
Making informed choices, parental rights vs individual
rights, preparation or termination, etc.
* Genetic treatment
The Superman solution, risks and solutions,
treatment costs. etc.
1.00 Lunch
2.30 Panel/plenary discussion
Nothing about us without us? Involving disabled people
in the debate
Panel to include:
* Bill Albert, Human Genetics Commission
* Mik Standing, Inclusive Practice, ACDET
* Agnes Fletcher, RADAR
* Representative*, People First in Wales
* Jacqui James, Disability Wales and Disabled People International
* Alastair Kent, Genetics Interest Group
* Prof. Peter Harper*, Institute of Medical Genetics
* Irena Wasilewska*: Commissioner, Specialised Health Services
Commission for Wales
* to be confirmed
3.45 Comments and Conclusions
4.00 Close
Costs: Disabled people and DW members*: £20
Voluntary sector non-members: £40
Professional/statutory sector: £80
(*Bursaries may be available to disabled people living in Wales)
Disability Wales, Wernddu Court, Caerffili Business Park, Van Road,
Caerffili CF83 3ED
Tel: 029 2088 7325 Fax: 029 2088 8702 E-mail:
[log in to unmask]
Disability Wales is a registered charity, no. 517391 and a company
limited by guarantee, no. 1998621
Penni Bestic
Information Officer
Disability Wales/Anabledd Cymru
Wernddu Court, Caerffili Business Park, Van Road, Caerffili CF83 3ED
Tel: 029 2088 7325
Fax: 029 2088 8702
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