Civil Society

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 States.

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 and authors.

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 and engagement.

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; and others.

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 technology concerns:

How 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 policy professionals?

How can we best link the issues surrounding reproductive genetic technologies with those surrounding global health inequities and prioritization of health-related research?

How do we negotiate the tensions concerning prenatal diagnostics, embryo research and protection of abortion rights?

How do we balance attention to future technologies such as inheritable genetic modification with campaigns focused on existing practices such as sex selection?

How do we deal with the uncertainties about what will be technically possible, and when?

What 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.

Next Steps

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.