Welcome to
GENETIC CROSSROADS #20
October 3,
2001
Supporting responsible uses of human genetic
technologies
Opposing the new techno-eugenics
The editors of Genetics Crossroads offer their deepest sympathy to those who suffered the tragic loss of loved ones on September 11.
CONTENTS
II.
OTHER NEWS
1.
Human Cloning Advocate Pushes Fertility Clinics to OK
Sex
Selection
2.
World Conference on Racism Addresses Human Genetic
Engineering
3.
Scientists Boycott Conference Organized by Cloning
Advocate
4.
Legislative Updates: Australia, Canada, Czechoslovakia
III.
UPCOMING CONFERENCE
1.
Gene Watch 2001: Workshops with the Experts - November 3,
Harvard
University
IV.
"EXPLORATORY INITIATIVE" IS NOW THE "CENTER FOR GENETICS
AND
SOCIETY"
I. HEALTH AND HUMAN RIGHTS LEADERS CALL FOR INTERNATIONAL BAN ON CLONING AND SPECIES-ALTERING PROCEDURES
Leading health law experts, advocates for human rights, and others gathered at Boston University September 21-22 for "Beyond Cloning: Protecting Humanity from Species-Altering Procedures." Conference organizers and speakers called for a global ban on genetic procedures that fundamentally change the nature of the human species.
"Uncontrolled use of the new genetic technologies risks setting us on a dehumanizing road to genetic genocide," said George Annas, professor and chair of Boston University's Health Law Department, one of the conference sponsors. "We need a comprehensive global treaty that bans the most dangerous genetic technologies while allowing beneficial medical applications to proceed."
More than 140 participants discussed the ethical, legal, and social challenges raised by human genetic technologies; the inadequacy of existing controls; possible provisions of a new global treaty; and political strategies for its adoption.
The envisioned global accord would ban the creation of human clones and the modification of inheritable genes, and provide for regulations to ensure that other new human genetic and reproductive technologies are used in ways that benefit rather than harm human life and society.
Conference organizers noted that many governments, including most recently those of France and Germany, have called on the United Nations to initiate discussions intended to lead to a global treaty, and that for such an effort to succeed a broad civil society initiative, including non-governmental organizations, is needed.
Leading participants in the conference included advocates of women's health and reproductive choice, disability rights, indigenous peoples rights, and environmental protection.
Proponents of a global ban plan the publication of a report outlining the need for such an initiative; further discussions with a wide range of scientific, legal, health, human rights, environmental and political leaders about ways to put such a proposal on the international agenda; and an international conference at a venue outside North America.
For a set of summary materials from the Beyond Cloning conference, including a draft text of a proposed accord, email your postal address to Jesse Reynolds of the Center for Genetics and Society at <jesse@genetics-and-society.org>.
Here are some of the key points made by conference speakers:
* Lori Andrews, Distinguished Professor of Law and Director of the Institute of Science, Law and Technology, Chicago-Kent College of Law, argued that bans, not moratoria, are needed for the most dangerous genetic technologies.
* George Annas, Professor and Chair, Health Law Department, Boston University School of Public Health and Co-founder, Global Lawyers and Physicians, argued that "individuals, countries, or corporations" have no rights to genetically alter the human species.
* Patricia Baird, University Distinguished Professor, Department of Medical Genetics, University of British Columbia and former Chair, Canadian Royal Commission on the New Reproductive Technologies, reviewed the public consultation process that has led Canada to propose national legislation that would regulate the new technologies, and ban cloning and inheritable genetic manipulation.
* Brent Blackwelder, President, Friends of the Earth, affirmed that the genetic manipulation of the human species and of the processes of the natural world in general should be strongly opposed by environmentalists.
* Alexander Capron, Director, Pacific Center for Health Policy and Ethics, University of Southern California, made a strong case for a moratorium on the creation of clonal embryos for research purposes.
* Michael Dorsey, Sierra Club National Board of Directors and Thurgood Marshall Fellow, Dartmouth College, emphasized the necessity for early participation by the Global South in any international treaty.
* Leonard Glantz, Associate Dean and Health Law Professor, Boston University School of Public Health, challenged participants to articulate more clearly why they oppose species-altering technologies.
* Michael Grodin, Professor of Health Law, Boston University, and co-founder, Global Lawyers and Physicians, demonstrated the inadequacy of existing regulations and structures to control species-altering genetic technologies.
* Debra Harry, Executive Director, Indigenous People's Council on Biocolonialism, argued that indigenous peoples need to be involved in the early stages of any proposed treaties.
* Richard Hayes, Executive Director, Center for Genetics and Society, emphasized the urgent need to build a broad social movement, including both professional organizations and mass-based popular organizations, to counter the push towards a techno-eugenic future.
* Andrew Imparato, President, American Association of People with Disabilities, recalled the history of eugenicist targeting of people with disabilities, and criticized the exploitative use of images of disabled people to motivate opposition to harmful technologies.
* Rosario Isasi, Health Law and Bioethics Fellow, Boston University School of Public Health, and Global Lawyers and Physicians (Peru), demonstrated a new interactive web site that displays national and international policies on human cloning and inheritable genetic modification. See <www.glphr.org/genetic/genetic.htm>.
* Stephen Marks, Director, Francois-Xavier Bagnoud Center for Health and Human Rights, Harvard School of Public Health, detailed existing international treaties and proclamations that establish grounds for constraining species altering technologies.
* Maxwell Mehlman, Professor of Law and Director, Law-Medicine Center, Case-Western Reserve University, noted that although a global treaty would face many obstacles, it appears to be an appropriate solution to the dangers posed by the new technologies.
* Stuart Newman, Professor of Cell Biology and Anatomy, New York Medical College, and Board Member, Council for Responsible Genetics, argued that human cloning and germline alteration are inherently unsafe, and that it would be impossible to "get there from here" without the unacceptable use of human lives as experiments.
* Judy Norsigian, Executive Director and Co-Founder, Boston Women's Health Book Collective, emphasized the special impact that new genetic and reproductive technologies have on women and children.
* Evelyne Shuster, Human Rights and Ethics Program, and Adjunct Associate Professor of Philosophy and Psychiatry, University of Pennsylvania, noted that the rhetorical categories used to describe the new genetic technologies bias us towards their acceptance.
* Susannah Sirkin, Deputy Director, Physicians for Human Rights, recounted the strategies and tactics used by Physicians for Human Rights to win a global treaty banning landmines.
* Ann Snyder, Executive Director, Ethics, Law and Biotechnology Society, Harvard Law School, spoke as a member of the Harvard student community. She called for more dialogue before making potentially irreversible decisions.
The Conference was co-sponsored by the Boston University Health Law Department, the Center for Genetics and Society, the Illinois Institute of Science, Law and Technology, Global Lawyers and Physicians, and the Harvard University Ethics, Legal and Biotechnology Society. Special financial support for the conference was provided by the CS Fund and the Jennifer Altman Foundation.
The conference planning team was George Annas, Richard Hayes, Evelyne Shuster, Lori Andrews, and Patricia Baird. Key staff assistance was provided by Evelyne Shuster, the Boston University Health Law Department, and the Center for Genetics and Society.
Beyond Cloning website: <www.bumc.bu.edu/www/sph/lw/website/index.htm>
1. Human Cloning Advocate Pushes Fertility Clinics to OK Sex Selection
The acting chair of the American Society of Reproductive Medicine (ASRM) Ethics Committee, John Robertson, has stated that it is some- times acceptable for couples seeking "gender variety" in their children to use preimplantation genetic diagnosis (PGD) for sex selection.
The opinion "stunned many leading fertility specialists," according to the New York Times. It was expressed in a letter from Robertson to Dr. Norbert Gleicher, a fertility specialist and founder of an organization that operates nine fertility clinics in the Chicago and NYC areas. Both Robertson and Gleicher are long-time advocates of human cloning.
"What's the next step?" asked Dr. William Schoolcraft of the Colorado Center for Reproductive Medicine in Englewood. "As we learn more about genetics, do we reject kids who do not have superior intelligence or who don't have the right color hair or eyes?"
In an October 1 statement, ASRM Executive Director Dr. Robert Rebar said that Robertson's letter does not reflect ASRM's position. The group's Ethics Committee will discuss the issue at its next meeting in January. In the meantime, Gleicher plans to start offering PGD for sex selection "immediately" (Kolata, 2001).
Because it is a selective technology, PGD has remained taboo for any- thing other than prevention of a handful of severe hereditary diseases. Sex selection by any means for non-medical purposes is against the law in many countries, and has been strongly opposed by women's rights groups around the world. In the US , a few fertility clinics offer a sex selection technique based on sperm sorting, but until now none has proposed using PGD, which is much riskier and more invasive.
Gina Kolata, "Fertility Ethics Authority Approves Sex Selection," New York Times, September 28, 2001.
ASRM Position on Gender Selection, Oct 1, 2001. <www.asrm.org/Media/Press/genderselection.html>
2. World Conference on Racism Addresses Human Genetic Engineering
A Nobel laureate writer and a health law expert spoke at the World Conference Against Racism (WCAR) in September about the potential of human genetic engineering to create a "future racism."
At a panel convened by UNESCO, South African writer and Nobel laureate Nadine Gordimer asked whether genetic engineering was "the new face of racism." She speculated about a future in which the "haves," who could afford access to genetic engineering, might live longer and healthier lives, while the "have nots"—"principally dark-skinned people"—would not be able to afford such access.
Boston University Health Law Professor George Annas said that human genetic engineering has the potential to divide humanity into "super- humans" and slaves, and that this "gene-ism" could "eclipse racism as the most destructive force on the planet." Annas asked the WCAR to consider a treaty to ban "all species-altering techniques," and spoke of the need to protect "genetic privacy."
UNESCO's Jerome Binde said WCAR needed to address genetic engineering to prevent the creation of "a two-track humanity" of super-humans and "sub-humans" who were either excluded or genetically manipulated so that they could be controlled by the "super-humans."
Online Health Service, <www.health-e.org.za/view.php3?id=20010901>.
3. Scientists Boycott Conference Organized by Human Cloning Advocate
Scientists and fertility experts withdrew from a conference when they learned that it was being organized by Severino Antinori, the Italian fertility doctor who has garnered headlines with his announced plan to clone human children.
The original sponsor of the conference, the Association of Private Assisted Reproductive Technology Clinics and Laboratories (known as APART), suspended Dr. Antinori's membership in the organization and cut its ties with the meeting.
Among those who decided not to attend the conference were Ian
Wilmut, one of the scientists involved in cloning the sheep known as
Dolly, and Dr. Anne McLaren, a member of the UK Human Fertilisation
and Embryology Authority. Wilmut told BBC News Online, "I accepted
the invite in order to explain why human reproductive cloning would
be dangerous. APART have now withdrawn and so have I."
4. Legislative Updates: Australia, Canada, Czechoslovakia
An Australian parliamentary committee has recommended a total ban on human cloning and on the creation of embryos for research. In addition it called for national regulation of research on adult and existing embryonic stem cell lines. But it was unable to reach agreement on the issue of using surplus human embryos for research. The committee's 300-page report is likely to form the basis of future state and federal policies. See <www.ananova.com/news/story/sm_403299.html>.
The Council of Europe's Convention on Human Rights and Biomedicine, which prohibits the cloning of human beings and human embryos, took effect in the Czech Republic on October 1. See <http://newsreal.%20yellowbrix.com/pages/newsreal/Story.nsp?story_id=23953848&ID=newsreal&scategory=Internet&>.
In Canada, comprehensive national legislation that would ban
human cloning and inheritable genetic modification and regulate new
genetic and reproductive technologies has been introduced. Because a
vote on the bill is not expected until late next spring, a number of
MPs from different parties are calling for immediate legislative
action to prohibit human cloning. Liberal MPs, however, argue that
the issue should be deferred until the complete bill can be
considered. See <www.canoe.ca/CNEWSPolitics0109/25_clone-cp.html>.
1. Gene Watch 2001: Workshops with the Experts
An In-Depth Look at the Challenges of Biotechnology in the 21st
Century
Saturday, November 3, 2001, 8:30 am-5:00 pm, Harvard
University
Co-sponsored by the Council for Responsible Genetics and the Indigenous Peoples Council on Biocolonialism
Workshops with experts on: embryos and genetic technologies, new reproductive technologies and their implications, no patents on life, workplace genetic discrimination, disability issues, the government and biotechnology, genetically engineered food, biotechnology and the informed public, genetics and the media, genetics and pop culture, cloning, religion and biotechnology, race and biotechnology, and MORE!
Richard Hayes of the Center for Genetics and Society will
co-chair a workshop on "The Politics of Human Cloning and
Inheritable Genetic
Modification: The Need for Progressive
Leadership."
Tickets: $15 general public, $10 CRG Associates and students. Special Conference Package: Admission and 1-year subscription to GeneWatch magazine: $19.95. Non-GE lunch: $15.
Conference limited to 150 participants, so reserve your spot early!
Tickets, info, registration: <crg@gene-watch.org> or
617.868.0870. Updated information at <http://www.gene-watch.org/>.
IV. "EXPLORATORY INITIATIVE" IS NOW THE "CENTER FOR GENETICS AND SOCIETY"
The Exploratory Initiative on the New Human Genetic Technologies,
which sponsors this newsletter, has changed its name to the Center
for Genetics and Society. The name change reflects the development
of the organization beyond its initial "exploratory" purposes to one
of more explicit social engagement and advocacy. New offices, a new
web site, and new program initiatives will be announced shortly.
This newsletter originated in 1999 out of the concerns of academics, activists, and others in the San Francisco Bay Area about the direction of the new human genetic and reproductive technologies. It is published by the Center for Genetics and Society (formerly the Exploratory Initiative on the New Human Genetic Technologies), a public interest organization working to alert the public and leaders of civil society about the urgent need for societal oversight of these technologies and the dangers of the techno-eugenic vision.
We support genetic and reproductive technologies that serve the public interest. We oppose those—such as human germline engineering and human reproductive cloning—that would be likely to exacerbate inequality, the commercialization of reproduction, and the commodification of human life.
GENETIC CROSSROADS is published approximately once a month. Feedback, submissions, and suggestions are welcome. Marcy Darnovsky will moderate. Please forward GENETIC CROSSROADS to others who may be interested.
Center for Genetics and Society staff:
Marcy Darnovsky, Ph.D.
<marcy.darnovsky@genetics-and-society.org>
Richard Hayes,
M.A. <richard.hayes@genetics-and-society.org>
Tania
Simoncelli, M.S.
<tania.simoncelli@genetics-and-society.org>
Jesse Reynolds,
M.S. <jesse.reynolds@genetics-and-society.org>
Subscriptions and other communications: <geneticcrossroads@genetics-and-society.org>
More Information
Analysis:
Examine the social, cultural, and economic landscape
Perspectives:
Explore various communities' concerns regarding human genetic
technologies
Policies:
Read about existing and potential regulations
Technologies:
Learn the basic science and consider arguments for and against