"Special Report on the Asilomar 25th Anniversary Symposium"
[II]. ADDENDUM: OPEN LETTER TO PARTICIPANTS IN THE ASILOMAR SYMPOSIUM
1. Thanks to signators of the Open Letter
We want to thank the over 250 of you who responded to our last-minute request to sign the Open Letter on human germline genetic engineering, which was distributed at the Symposium on Science, Ethics and Society held at the Asilomar Conference Center on February 15-17. As most of you know, sixty-seven noted biologists, scholars, lawyers, government officials and others gathered at this invitation-only event to assess the experience of genetic engineering regulation in the U.S., and to consider its future prospects.
The signators to the Open Letter are extraordinarily diverse. They include scientists, physicians, public health experts, disabled rights activists, environmentalists, African-American, Latino- American and Native-American activists, women's health leaders, artists, high school teachers, religious leaders, attorneys, nurses, students and others. They come from North America, Europe, Africa, Latin America, Asia and Australia. We believe that the Open Letter successfully demonstrated that any attempts to move humanity down a slippery slope towards a techno-eugenic future will arouse strong opposition.
The text of the Open Letter is attached at the end of this newsletter. We can email you a text-file containing the letter as distributed, including the signators, or we can send you a hard copy of the document itself. Let us know if you would like either or both of these. If you would like a hard copy be sure to include your postal address.
A brief report on the Symposium at Asilomar follows. It highlights those aspects that concern the politics of germline engineering. The Symposium agenda is shown following these comments.
An official report is being prepared by Prof. Alexander M. Capron of the Pacific Center for Health Policy and Ethics at the University of Southern California, which sponsored the Symposium. Contact him at email@example.com to find out how to get a copy...
Some signators to the Open Letter have not previously received this newsletter. If you do not wish to remain on our list, please let us know. See the instructions in "About the Techno-Eugenics Email List newsletter," near the end of this message.
2. Report on the Symposium on Science, Ethics and Society: The 25th Anniversary of the Asilomar Conference, Asilomar Conference Center, Pacific Grove, California, February 15-17, 2000.
In February of 1975 nearly 150 leading molecular biologists and others gathered at the Asilomar Conference Center to devise procedures to oversee the development of recombinant DNA technology in the United States. These procedures were adopted by the U.S. government and largely remain in place today. Earlier this month another group of molecular biologists and others met, again at Asilomar, to evaluate these policies and to consider whether the "Asilomar process" might be used to respond to new challenges regarding genetic engineering. Participants included key organizers of the 1975 conference.
The Asilomar process is controversial. In the words of the organizers of the February 2000 Symposium, "For some, Asilomar stands as a singular example of scientific responsibility....Yet others see Asilomar as an attempt by scientific leaders to maintain control in the face of possible regulation...shielding science from the public and its elected representatives." (Symposium announcement, p. 1).
The most highly charged discussions at the Symposium concerned financial conflicts of interest and the safety of current human gene transfer experiments. Some speakers argued that the credibility of biomedical researchers claiming to act in the public interest has been irrevocably forfeited as a result of these researchers' new, pervasive, and deep commercial entanglements. One government official suggested that scientists might be prohibited from having a financial stake in any corporation that supports their clinical research.
Other speakers were caustic in their assessment of the "cowboy" culture of much of the gene therapy research community. The recent death of Jesse Gelsinger following gene experiments at the University of Pennsylvania figured prominently in the discussion. Dr. Alan Schechter of the National Institutes of Health charged that "gene therapy has many of the worst examples of clinical research that exist." Another participant noted that the term "gene therapy" is grossly misleading, and suggested "gene transfer experiments on human subjects" as the more properly descriptive phrase.
It is important to realize that statements critical of the current state of affairs should not necessarily be taken as criticisms of the project of human genetic engineering in general. In fact, those at the Symposium who spoke most strongly against the financial conflicts of interest, overblown claims, and shoddy research that pervade the field today included some of the strongest proponents of human genetic engineering overall, including both therapeutic and enhancement applications of germline engineering. This is hardly a contradiction. These scientists want to see these technologies perfected and applied, and they are aware that current conditions and practices could jeopardize that prospect.
Symposium participants were acutely aware that public support is essential if human genetic engineering is to continue in a manner that suits the researchers/corporate stakeholders, i.e., with health and environmental concerns narrowly framed, and completely free of any consideration of the longer term social impacts. For the most part "the public" was portrayed as an uninformed, emotional, opaque entity. Opposition to GMO foods was described as having arisen last year "out of the blue." Environmentalists were ridiculed for "fearing change." One participant suggested that cognitive scientists and anthropologists should be asked to help them understand how "ordinary" people form opinions about genetic engineering. The precautionary principle came under sustained attack, with one noted scientist saying, "No one can assure zero risk. Penicillin has risks. We fly in airplanes. So I don't understand how anyone can put forward this precautionary principle as something we all have to adhere to." A minority of participants spoke up in opposition to this assessment of the public, noting that the deepest public concerns draw on normative values that lie outside the domain of scientific analysis.
Although the Symposium agenda highlighted germline engineering as a topic for discussion, it was addressed only minimally. Dr. Paul Billings of the Heart of Texas Health Care System spoke articulately against germline engineering, citing the near impossibility of estimating the risks involved in manipulating human embryos at early developmental stages, the lack of any overriding medical need, the great expense and misallocation of resources involved, the profound eugenic implications, and the fact that the U.S. would largely be going against world opinion if it allowed germline engineering. He said that scientific research needs to proceed within a larger framework of societal approval, and called for a "radical re-engineering of human genetic research," focused on social well-being and democratic values.
The Open Letter was distributed to all participants on the morning of the second day of the Symposium. At various points in the meeting several participants, including Dr. Charles Weiner of MIT and Bishop Pierre DuMaine of San Jose, called attention to the letter, but there was no move by the group as a whole to address the issues it raised.
Private conversations revealed a range of opinions about germline engineering. More than a few noted scientists attempted to avoid taking responsibility for an opinion by invoking the claim that "germline is inevitable." When pressed, most who held this view were also of the opinion that germline engineering is desirable, or at least not so undesirable that it needs to be banned. One widely honored scientist quite seriously defended germline engineering on the grounds that "poor families could engineer their children to be basketball players."
On the other hand, a few prominent scientists, including some of the strongest advocates of somatic gene transfer applications, expressed considerable doubts about germline engineering, and indicated that they would be disposed to support a ban. If a strong citizen campaign can be mobilized in opposition to germline engineering, scientists in this latter group could play an important role.
An explicit purpose of the Symposium was to consider whether the model of the 1975 Asilomar process might be applied to current newly controversial genetic engineering technologies, including genetically modified plants and animals, human germline engineering, cloning, and stem cell technologies. As noted, under this model research scientists assessed the risks, drew up proposals for guidelines and for oversight committees comprised largely of the researchers themselves, and had these proposals adopted as federal policy.
A majority of Symposium participants seemed to believe that such a process was no longer tenable. In addition to recognizing that their moral authority had been compromised by financial conflicts of interest, participants noted that the issues were now more complex, impacted more clearly on deep social and moral commitments, and are regularly being addressed by a large number of advisory committees and commissions.
It was observed that the 1975 Asilomar conference had been motivated by the sudden realization that plans were underway to genetically engineer pathogenic bacteria that could escape from laboratories, creating a condition of quasi-emergency. One speaker suggested that an analogous development would be the announcement of a successful germline engineering procedure in a primate, and that this could happen at any time. Other speakers suggested that fears concerning xenotransplantation and DNA vaccines might be addressed through an Asilomar-type process.
Although the balance of opinion was against the practicability of the Asilomar model in its pure form, no participants suggested that they should resign themselves to letting "the politicians" determine the future course of genetic engineering research and technology. Rather, they appeared to understand that in the coming period they would have to be more conventionally political in the furtherance of their interests, and of what they believe to be in the public interest.
-- Richard Hayes, Coordinator, Exploratory Initiative on the New Human Genetic Technologies. Hayes is a co-editor of this newsletter and attended the Symposium.
3. Agenda of the Symposium on Science, Ethics and Society: The 25th Anniversary of the Asilomar Conference
TUESDAY, 15 FEBRUARY 2000
OPENING SESSION: The Path to Asilomar and the Road Beyond
Commentators: What Did the Asilomar Exercise Accomplish, and What Did
it Leave Undone?
SESSION II: The Public: Alerted, Educated, Unduly Alarmed?
Reporting Recombinant DNA: Asilomar and the Press
Commentators: Asilomar and the Media
WEDNESDAY, 16 FEBRUARY 2000
SESSION III: Contending with Contemporary Issues in Light of the Accomplishments and Shortcomings of Asilomar
A. Genetically Modified Organisms
Commentators: Rebecca Eisenberg, University of Michigan; Willy de Greef, Novartis; Rebecca Goldburg, Environmental Defense Fund ; Julian Kinderler, University of Sheffield ; Peter Starlinger, University of Cologne; Ulrich Trohler, University of Freiburg
B. Genomics: Genes, Human Diversity, and Ownership
Commentators: John Barton, Stanford Law School; Troy Duster, New York University; Henry Greely, Stanford University ; Michael Kaback, UC San Diego; Margaret Lock, McGill University; Alex Mauron, Unite de Recherche en Bioethique, Geneva
C. Somatic and Germline Gene Therapy
Commentators: Paul Billings, Heart of Texas Health Care System; David Magnus, University of Pennsylvania; Parris Burd, Maxygen; Arno Motulsky, University of Washington Medical School; Anders Nordgren, Uppsala University; Alan Schechter, National Institutes of Health; LeRoy Walters, Kennedy Institute of Ethics; Susan Wolf, University of Minnesota Law School
THURSDAY, 17 FEBRUARY 2000
CLOSING SESSION: Asilomar, Then and Now: What Roles for Scientists,
the Press, Policymakers, and the Public-at-Large?
Say "No" To Germline Engineering: An open letter to participants at the Asilomar Symposium on Science, Ethics and Society
Pacific Grove, California
It is fitting that a symposium on the occasion of the 25th anniversary of the Asilomar Conference consider not just the legacy of that event, but also the controversies generated by ongoing developments in genetic technology.
Our primary concern is with human "germline" genetic engineering -- the manipulation of the genes passed to our children.
An increasing number of noted scientists, academics, and others are saying that human germline engineering is an acceptable use of the new genetic technologies. Some of their recent statements are shown below.
Many of these advocates have dropped any pretense that their interest in germline engineering is limited to "therapeutic" applications. They now speak enthusiastically of using germline engineering to "enhance" the human species.
This is alarming, and demands a response. Human germline engineering is a threshold technology which, if developed and used, would put into play a wholly unprecedented set of social, psychological and political forces. It would change forever the nature of human society, feeding back upon itself with impacts quite beyond our ability to imagine, much less control.
Some of the new proponents of germline engineering look forward to a world in which parents select their children's genes, literally from a catalogue, in order to give them a competitive "edge" in the quest for success. They freely acknowledge that this could lead to profoundly greater inequality, with humanity eventually segregating into genetic castes, or even into separate species.
This vision of the human future is grotesque. Casually dismissing principles of democracy and civil society, it celebrates nothing less than the end of our common humanity. The fact that many scientists appear ready to welcome it is deeply disturbing.
Equally disturbing is the eagerness of many scientists to authoritatively declared that human germline engineering is "inevitable." In fact, many countries have already banned, or have agreed to ban, germline engineering. The United States and the rest of the world can decide to do the same.
There is no compelling medical justification for human germline engineering. Many existing alternatives allow couples at risk of passing on a genetic disease to avoid doing so. Scientists who propose germline engineering as a general means of preventing conditions such as cystic fibrosis and sickle-cell anemia are abusing the trust the public puts in them.
Citizen concern about genetic engineering is growing rapidly. Controversy over genetically modified food has spilled into the streets. Anixiety can only mount as the public becomes aware of the plans to produce genetically modified humans.
The prospect of human germline engineering presents a point of decision -- one that ranks among the most consequential that humanity will ever make. We should acknowledge that human germline engineering is an unneeded technology with potentially horrific risks, and adopt policies to ban it. Such a decision will help clear the way for support of those applications of modern genetic science that hold promise for preventing disease and reducing suffering.
It is imperative that responsible scientists and others speak out in opposition to human germline engineering. In the face of the concerted efforts underway to promote it, silence implies consent.
Many of the participants in this 25th anniversary symposium are pioneers of genetic science. Others are social scientists or policy makers who have shaped its public perception and regulation. All of you have high stakes in the future of genetic science and technology. Your response to the effort to push humanity toward a techno-eugenic future will speak loudly. It will shape the way you and your work are remembered.
The Asilomar 25th anniversary symposium offers a historic opportunity to speak out forcefully and publicly against human germline engineering. We urge you to take it.
[The letter was signed by 247 persons. Organizations were listed for identification purposes only.]
NOTICE: In accordance with Title 17 U.S.C. Section 107, this material is distributed for research and educational purposes only. **
Last Updated on 3/4/00
By Rachel C. Benbrook