On October 12-15, 2003, some 90 civil society activists and
others from 70 organizations and 30 countries gathered for three
days in Berlin, Germany, to discuss what it will take to build
a global movement to bring the new human genetic technologies
under social control. To our knowledge this was the first major
international conference of its kind.
The conference produced an extensive website, containing full proceedings
from the conference, a list of participants, and articles and
other documents posted by participants. See also the text of the plenary presentation by CGS
Associate Director Marcy Darnovsky.
The conference was organized by the Heinrich Boell Foundation
in collaboration with the Institut Mensch, Ethik und Wissenschaft
in Germany, and the Center for Genetics and Society in the United
Constituencies, Organizations, Issues
Constituencies and organizations represented at the conference
included: international health equity networks such as Citizens
Health Initiative and Peoples Health Movement; feminist and
women's health organizations such as the Association for Women
in Development (AWID),, the Center for Health and Gender Equity,
and Reprokult; disability rights advocates such as Disabled
Peoples International and the International Centre for Bioethics,
Culture and Disability; developing country NGOs such as ABANTU
in Ghana and FOBOMADE in Bolivia; environmentalists such as
Friends of the Earth and GENET; religious social justice activists
from the World Council of Churches and the National Council
of Churches-USA; and noted academics, policy experts, philosophers
Nearly all participants actively contributed to the conference
as speakers or moderators, in numerous plenary sessions and
working groups. Experiences of regional activism were shared,
and common grounds from which to build an international civil
society position and strategy were discussed. The conference
became a collective project, creating an atmosphere of commitment
Issues addressed ran the gamut, including: the "geneticization"
of biomedical research and the international public health agenda;
the social consequences of technologies such as human cloning
and genetic alteration; sex selection and disability deselection;
genetic discrimination and privacy; the spectre of new eugenic
technologies and ideologies; the prospects for meaningful national
and international controls; biopiracy, biobanks, gene patenting,
and the biotech industry; military uses of human genetic technology;
philosophical foundations for proper use of genetic science;
Developing a Framework for Progressive Politics
Particular attention was given to some of the challenges facing
the development of a progressive politics around human genetic
do we build cohesive networks that address the concerns of both
Northern and Southern NGOs, disabled and abled constituencies,
religious and secular participants, grassroots activists and
can we best link the issues surrounding reproductive genetic
technologies with those surrounding global health inequities
and prioritization of health-related research?
do we negotiate the tensions concerning prenatal diagnostics,
embryo research and protection of abortion rights?
do we balance attention to future technologies such as inheritable
genetic modification with campaigns focused on existing practices
such as sex selection?
do we deal with the uncertainties about what will be technically
possible, and when?
is the proper relation between activism concerning GM foods
and GM humans?
Many participants discussed questions of framing: How do we
avoid being cast as opponents of medical research and individual
liberties? How do we break down the media mindset that privileges
scientists as the final arbiters on human genetics issues? Which
framings and terminology invite popular engagement, and which
discourage this? How much do we focus on the technologies themselves,
and how much on the social justice and global equity values
that motivate our concerns?
A sentiment voiced repeatedly was the necessity of addressing
the issues posed by the new human genetic technologies in the
context of broader social and political questions. The need
for civil society interventions, and their points of departure,
must be understood against the background of changes in the
health care system and in global intellectual property rights
regimes, and increasing social and economic disparities worldwide.
The intent of the conference was not to agree on single answers
to these and other questions, but to ensure that those involved
have a deeper understanding of the diverse political contexts
in which their work is taking place, and a keener appreciation
of the opportunities and challenges we face. The conference
was an early step towards building an international network
that can help civil society stakeholders participate meaningfully
in the regulation of new and emerging genetic technologies.
The debate on the limits to be set for technologies that exceed
human nature can no longer be left to the academic, industry,
and policy establishments.
By the conclusion of the conference there had been much discussion
of possible specific next steps. Proposals for additional conferences
and other initiatives had been put forth by participants from
Africa, Brazil, China, India, Canada, New Zealand, Eastern Europe
and Iraq. Collaborative efforts were initiated by subsets of
participants concerning sex selection, biobanks, the upcoming
World Social Forum in India, the prospect of an international
feminist network, and more.
Thanks and Acknowledgements
CGS would like to acknowledge and express our appreciation
for the central roles in the organization of the conference
played by the staff of the Heinrich Boell Foundation, notably
Dr. Andreas Poltermann, Senior Officer for Education, Science
and New Media; and by Dr. Sigrid Graumann, Senior Researcher
for the Institute Mensch, Ethik und Wissenschaft. They and others,
notably Stephan Ertner and Annekatrin Velasquez of Heinrich
Boell, coordinated a complex endeavor with grace and efficiency.
In addition, Sarah Sexton of The Cornerhouse, in the UK, deserves
thanks for her advice and key roles before and during the conference.