PHA-Exchange> Berlin Conference

[Claudio]

Conference "Within and Beyond the Limits of Human Nature",  Berlin,
12-15/10/2003

Dr Gilles de Wildt of Birmingham ( Email: gillesdewildt at yahoo.com) will
represent PHM in this conference together with Alejandra Rotania from WGNRR.
He has asked our listmembers to give comments directly to him on three
abstracts of topics he plans to cover. Kindly read and give him feedback at
his address.

Claudio

(your moderator)





Workshops


I could do the following 7 minute introductions for the following workshops
(or in other workshops as appropriate)



Day 1 Mon



2. Women's Family and Children's Health Perspectives



Or under:



1. Protection of Human Rights



The genome: a challenge to trust in health care and equity


Genetic diagnostics will develop quicker than therapeutic and preventative
applications.  The evidence base for predicting increased risk of disease on
the basis of genetic characteristics is still poor. Therapeutic
interventions are still limited and mostly experimental. Societal and
environmental factors will remain very important and may modify or dwarf the
influence of genetic disposition for many conditions.



This will not stop profit or non-for-profit insurers and employers to apply
risk selection on the basis of actuarial tables or less sophisticated
means, if they are allowed to do so. Current measures to limit or outlaw
risk selection on the basis of genetic information and establish a level
playing field are still ad-hoc in many countries.



Individuals and health care professionals will face huge dilemmas. Knowing
that one has reputedly disadvantageous genes may allow prevention or
treatment if affordable, or generate hope that remedies can be found. The
same knowledge may ruin the security of individuals, their dependents and
possibly their offspring, when information is disclosed to insurers and
employers. In most countries, refusing legally allowed disclosure may mean
that insurance or jobs are denied. Poorer people will be most disadvantaged.

Plausible nightmare scenarios from the consulting room will be discussed.
Possible responses and policy options will be discussed.

Health professionals may have conflicts of interests, but should be guided
by internationally agreed professionals ethics. Health professionals and
civil society must demand that internationally agreed human rights in the
field of health be fully upheld.  The role of States as standard setters and
regulators will be discussed.





Day 3 Wed



6. Biomedical technology and health



Current international economic and trade policies, including intellectual
property rights, mean that preventative and therapeutic applications are
likely to be extremely expensive. They will not benefit poor people and poor
countries unless governments intervene.



There is the risk that genome research takes away attention and funding from
research into more important areas, such as diseases of poverty, and their
control, including societal interventions.



Possible responses and policy options will be discussed. Civil society must
demand that equity and internationally agreed human rights in the field of
health should guide national and international economic and trade policies,
as well as policies for R&D (research and development). Current trade
policies need to be drastically overhauled to become compatible with human
rights. This may imply that patent rights are limited. Concrete suggestions
will be presented for discussion.



The World Health Organisation and other actors should be asked to become
stronger advocates of the right to health, and help restore an appropriate
balance in global health research. States may need to buy patent rights for
the public good.



Panel "Towards strategies and actions"

Title: "Global regulation by social movements".

Abstract:



The policies of States and blocks such as the European Union vis a vis
genome research and its applications are very much inspired by
considerations of competitive technological development and possible market
shares. They fail to adequately address a number of risks:

-         sociobiological: tampering with nature in a reckless manner;

-         direct discrimination of individuals and groups on the basis of
genetic diagnostics

-         income based discrimination, because diagnostics, prevention and
treatment options are expensive. This will most affect poor people and poor
countries.

-         The drawing away of attention and funding for controlling diseases
of poverty, including societal interventions.



There are international instruments to try and correct this. These include
internationally agreed human rights in the field of health and health care,
and internationally agreed codes of conducts for health professionals. Also,
there are statements by organisations such as UNESCO and the Association of
European Medical Associations, which put the dignity of human beings first.

Regarding risk assessments and the precautionary principle, expertise and
experience from environmental campaigns can be taken.



Civil society should insist that human rights and medical ethics become core
principles for genome technologies and their applications. Civil society
should demand that States and international organisations such as WHO carry
out health and equity impact assessments and risk assessments. These
assessments should use yardsticks including internationally agreed human
rights in the field of health and health care. They should be participatory
in nature and include genuine representation of civil society, and be free
from pressures arising from international economic and donor policies.

Assessments should include the potential effects of different scenarios of
genome applications on health and equity, both nationally and
internationally, under different social and healthcare systems. If States
and international organisations are reluctant to do so, civil society and
international groups of interested scientists could initiate this
themselves. Civil society could play a monitoring role.