GeneWatch
Volume 16 Number 1
January 2003

20th Anniversary Editorial
by Sheldon Krimsky & Ruth Hubbard

Autism and Genetics
(also available in
.pdf format)
by Martha Herbert & Chloe Silverman

Newswatch

Biotech's Hall of Mirrors
by Jonathan Matthews

Technologies of Justice
by Peter Shorett

DNA Down Under
by Michael Strutt

Can Genetics Provide Better Treatment for Breast Cancer?
by Sujatha Byravan

Genetic Power to the People: An Interview With Tony Mazzocchi


ABOUT GENEWATCH

GeneWatch is America’s first and only magazine dedicated to monitoring biotechnology’s social, ethical and environmental consequences. Since 1983, GeneWatch has covered a broad spectrum of issues, from genetically engineered foods to biological weapons, genetic privacy and discrimination, reproductive technologies, and human cloning.

The centerpiece of the current GeneWatch is Marcy Darnovsky's analysis of new sex selection technologies. We also present the first version of CRG's growing list of security breaches and accidents at federal biodefense laboratories; an update by Sujatha Byravan and Sheldon Krimsky of a planned federal biodefense lab in Boston; Phil Bereano's much-needed clarification of how international regulatory systems will interact; and an overview of Chinese biotechnology by Nancy Chen.

To find out more about subscribing to GeneWatch and having it delivered to your doorstep six times a year, just click here.

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The Origins of CRG

by Ruth Hubbard & Sheldon Krimsky


“While the motley hundreds of citizens, who that night jammed the old wood-paneled [Cambridge] City Hall to its balconies, were settling down enough for voices to be clearly heard, [Mayor] Velucci brought in the Cambridge public high-school choir to set a properly lofty tone for the fateful deliberations that were to follow under the scorching lights of the TV cameras. With appropriate fervor, the choir sang, ‘This land is your land’.”

— John Lear, Recombinant DNA: The Untold Story

The Council for Responsible Genetics and GeneWatch turn twenty in 2003, a good time for reflection on where we have come from and where we should be headed. In the late 1970s, scientists, environmentalists, public health and labor activists and other concerned citizens came together in response to unprecedented developments in genetics and biotechnology to form the Coalition for Responsible Genetics Research and the Coalition for the Reproductive Rights of Workers. These merged into our parent organization, the Committee for Responsible Genetics (later renamed the Council for Responsible Genetics), and we launched GeneWatch.

“A technological revolution is underway in the biological sciences,” began the premier issue of November - December 1983. “Private investors and corporations have invested over $1.1 billions in biotechnology and the field is still in its infancy. . . . Almost every week, newspaper headlines represent new and more fantastic breakthroughs in the scientific understanding and manipulation of genes. . . . These reports often fail to ask important questions such as: how will the new crop varieties affect farmers and farmworkers; what are the long term implications of human gene therapy; and how can the public participate in decisions regarding biotechnology? It is only through an informed public that the course of technological change in genetics can meet the widest social needs over many generations.”

CRG’s agenda thus was clear from the start, building on what was the precipitating event that launched our two precursor coalitions, namely, the public hearings held, in June 1976, by the Cambridge City Council. These hearings were called in an effort to minimize hazards resulting from the manufacture of genetically modified microorganisms in university or commercial laboratories and their potential escape into the community. Though these hearings have been caricatured by some scientists, they were a premier exercise in citizen participation in scientific decisions that affect our lives. They resulted in the appointment of a Cambridge Experimentation Review Board, which proposed a local ordinance to regulate potentially hazardous experiments. Similar ordinances were adopted by other communities and also helped to broaden public representation on the National Institutes of Health’s Recombinant DNA Advisory Committee (RAC).

The committee of Cambridge citizens alerted the nation to keep a vigilant eye on future genetic research. In its words, “the social and ethical implications of genetic research must receive the broadest possible dialogue in our society” including whether all knowledge is worth pursuing, whether a particular route to knowledge threatens our precious human liberties, and how to ensure that decisions are arrived at democratically. CRG was the first public interest group formed specifically around the impact of new genetic technologies and the need for their democratic control.

The very first issue of GeneWatch warned about genetic engineering’s potential for manufacturing new types of biological weapons and argued that it is impossible to distinguish between research aimed at offensive and defensive uses of such weapons. With support from CRG, founding Board member Susan Wright’s landmark book, Preventing a Biological Arms Race, provided a framework for strengthening the Biological Weapons Convention. CRG was also active in the passage of federal legislation that made the prohibitions of the biological weapons convention part of U.S. civil law.

Over the years, as efforts at genetic modification have moved from microorganisms to plants and animals, including humans, CRG’s efforts to educate and advocate about these issues have broadened also. Initially focused on environmental releases of genetically manipulated microorganisms, such as the bacteria advertised to mop up oil spills, or to protect agricultural crops against frosts, genetic modification has become the stock in trade of the transnational agrochemical corporations, such as Monsanto and Novartis, which manipulate the world’s major crop plants and farm animals. Genetic modification of crops and the concomitant rise in monopoly control of agriculture will narrow the diversity and increase the vulnerability of the world’s food supply.

Various genetic modifications have been touted as beneficial. In reality, the dependency on global agribusiness threatens the survival of small-scale and subsistence farmers. Protecting seeds is the theme of Genetically Engineered Food: Changing the Nature of Nature, by Martin Teitel and Kimberly Wilson, two of CRG’s former staff. This influential book was connected to CRG’s safe seed campaign, a project that supports the production and distribution of non-GM seeds.

The Council for Responsible Genetics was the first group to address the implications of genetic testing and screening and their potential for discrimination — initially in the workplace, but eventually in all settings, especially those involving health and life insurance. We are indebted to the late Tony Mazzocchi, internationally recognized leader of the Oil Chemical and Atomic Worker’s Union and the U.S. Labor Party, also a founding CRG Board member, who helped us to understand how genetic screening can be used to stigmatize people [see page 15]. Over the years, CRG has worked with legislators and insurers, and with individuals who have experienced genetic discrimination, to counter the insidious potential of genetic testing.

Since its earliest days, CRG has raised questions about the supposed benefits of pre-natal testing and other technologies touted to improve birth outcomes on women, children and society. These kinds of technologies are usually advertised as increasing women’s reproductive choice. CRG unequivocally supports women’s right to reproductive autonomy. At the same time, CRG has been keenly aware of the problems inherent in women having to decide whether to use technologies of questionable predictiveness. The failure to use these technologies can make women feel responsible for health problems that their children may encounter.

In addition, CRG, along with disability rights organizations, has warned of the discriminatory and eugenic potential arising from the implication that any form of disability is to be avoided at all cost. Given the uncertainties of genetic predictions and the range and unpredictablilty of expression of most inborn conditions, it is far from clear that, for most women, the benefits of predictive testing outweigh its burdens. As for the more novel or prospective technologies, such as reproductive cloning or the introduction of heritable genetic alterations into eggs, sperm, or embryos that are intended to be gestated, these constitute human experimentation of a kind that should be considered prohibited by the Nuremberg Convention.

A critical thread running through CRG’s positions and activities has been its analysis and rebuttal of genetic reductionism — the oversimplification that represents genes as determining the way organisms grow and function, while neglecting the extraordinarily complex relationships between genes and environments in an organism’s development. Prominent examples of this kind of reductionism, as applied to humans, are currently being popularized under the name of evolutionary psychology. They are also being promoted with overstated promises of the hypothetical benefits of gene “therapy” and genetic testing, diagnosis, and prediction. All gene-based health information is inherently ambiguous because genes are not determinative. Moreover, most predictions have only statistical validity.

Genetic reductionism also reveals itself in risk assessment of genetically modified organisms, where genes are often viewed according to the “beads on a string” model. This false model of the genome has been used by corporations to lobby against testing and labeling of GM foods. Clearly, this will remain an area of great importance to CRG.

For two decades GeneWatch has been a leading international forum for critical commentary and early warning signals on new applications of genetic technologies. It has also pointed to the oppressive social policies such applications are likely to engender. Over the years, CRG has published articles alerting readers to:

- The abuse of human growth hormone in normal individuals
- The rising conflicts of interest in science
- The patenting of genetic information
- The increasing dependency on toxic chemicals of genetically modified crops
- DNA databanks that create new opportunities for infringing on personal privacy
- Dangerous transgenic research animals such as the “AIDS mouse” produced in the 1980s
- Genetic modification of human embryos.
Throughout its two decades of existence, GeneWatch has warned that the technological fixes offered by genetic technologies will not address the major global problems of environmental degradation, hunger and disease. Despite the hype that accompanies news of the latest genetic discoveries, major social needs cannot be met without a collective, communitarian response to human needs.

Whereas CRG started as virtually the only organization publicly and critically discussing these issues, we are now one of many. Onward to further decades of productive social activism to ensure that science is of the people, for the people and by the people.

***

Sheldon Krimsky, PhD, is the Vice Chair of the CRG and Professor of Urban and Environmental Policy at Tufts University. He served on the National Institutes of Health Recombinant DNA Advisory Committee from 1978-1981. Ruth Hubbard, PhD, is the Professor Emerita of Biology at Harvard University. Each has authored numerous articles and books on the science and politics of biotechnology.

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