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Welcome to the
Techno-Eugenics Email Newsletter
Number 12
October 16, 2000
Supporting genetic science in the public interest
Opposing the new techno-eugenics
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"What can happen when the technology used in support
of
genetic thinking is not the crude technology of shackles
and slave ships, of showers that pour lethal gas and of
mass ovens, or even the technology of surgical sterilization,
but the fabulous, fantastic, extraordinary technology of
the new genetics itself?...My children will not be led
to
genetic technology in chains and shackles, or crowded into
cattle cars. It will be offered to them."
-- Barbara Katz Rothman, sociologist, City University
of New York, "A Sociological Skeptic in the Brave
New World," Gender & Society (v12 n5, October
1998)
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CONTENTS
I. EDITORS' NOTE
II. NOT A DESIGNER BABY: Embryo Selection Provides Tissue
Match
for Sick Sister
III. NEWS AND POINTERS
1. New Bans on Human Genetic Modification in Japan and Netherlands
2. Greenpeace Prevents Patents on Pig-Human Embryos
3. Gelsinger Wrongful Death Lawsuit Names Bioethicist Caplan
IV. RECENT EVENTS
1. California Cloning Committee Meets in Los Angeles
2. Scientists, Activists, and Biotech Execs Debate Human
Genetic
Modification at State of the World Forum
V. UPCOMING EVENTS AND NEW RESOURCES
1. Sessions on Human Genetic Modification at Bioneers 2000,
San Rafael, California, October 20-22
2. "Preventing the Misuse of Genetic Technologies,"
New York
Open Center, Saturday November 11
3. "Made Not Born:" Anthology on Biotechnology
Available Soon
4. Art Exhibits on Biotechnology
VI. ABOUT THE TECHNO-EUGENICS EMAIL NEWSLETTER
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I. EDITORS' NOTE
Developments in genetic and reproductive technology are proceeding
at a
furious pace. These stories have surfaced just in the past month:
o the Nash case and its implications for genetically enhanced
babies
o the discovery of a patent application for a pig-human embryo
o the announcement by the Raelian "religion" that
it will soon try
to clone a dead child (see Issue 11 of this newsletter)
o the transgenic glowing rabbit created as a work of art
o claims by a biotech company that cloning is a good way to
save
endangered species
We have entered a critical period. Most people are not fully
aware of
the implications of these fast-moving technologies, and many media
accounts muddy the situation by echoing claims that their use
is
inevitable. Advocates of "designer humans" are doing
their best to
control the debate, and to portray human genetic modification
as an
issue of reproductive choice and scientific progress.
Many countries have already acted to ban human reproductive
cloning
and germline engineering--the most threatening of the new genetic
technologies--and to establish regulations for others. The European
Commission has announced that it will sponsor a symposium in Brussels
in early November to explore a common European policy on these
matters.
In the United States, independent evaluation of these technologies
and
the political issues they raise is beginning, and activist responses
to them are getting underway. Greater involvement by the public
and
civil society organizations is urgently needed. It will be far
easier
to prevent a techno-eugenic future if we act soon, before human
genetic
modification develops further, either as technology or ideology.
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II. NOT A DESIGNER BABY: Embryo Selection Provides Tissue
Match for
Sick Sister
Prominent and often misleading media coverage greeted the early
October
announcement of a baby born after the embryo from which he developed
had
been genetically screened and selected for two different traits.
Using a
procedure known as preimplantation genetic diagnosis (PGD), technicians
selected, from among embryos produced by in vitro fertilization,
one that
would result in a baby who would be both unaffected by Fanconi's
anemia,
and able to serve as a source of compatible tissue for his sister,
who
is affected by the disease.
Many reports referred to Adam Nash as an "engineered"
baby. A CNBC news
show called him "the world's first designer baby." But
the embryo from
which Adam grew was selected. It was not "engineered."
The Nash case in
fact demonstrates that it is unnecessary to engineer, design,
or in any
way modify the genes of a human embryo in order to bear a child
who is
free from a serious gene-related disease.
Other news reports accurately described the procedures used
to bring
about Adam's birth, and while supporting their use in this situation,
appropriately raised concerns about a "slippery slope"
to a world of
genetically enhanced children. This prospect is unfortunately
made
more likely by the confusion between PGD and germline engineering
so
amply demonstrated in accounts of the Nash case.
The lesson we believe is best taken from this case is the urgency
of
implementing a global ban on human germline engineering, in order
to
provide a clear stopping place on this slippery slope. Many countries,
but not the U.S., have already passed such laws.
Another important lesson is the need for effective and accountable
regulation of other human genetic and reproductive technologies.
Again
unlike some other countries, the U.S. currently lacks social oversight
of many controversial procedures. In the UK, the Human Fertilisation
and Embryology Authority allows PGD only at licensed facilities.
It
must approve each use of PGD, which it does only when there is
a
serious medical condition.
It's important to recognize that PGD and prenatal screening
are far
from unproblematic. Among those questioning them are disability
rights
activists who fear that their widespread availability encourages
intolerance for anyone perceived as having an "imperfection."
They
oppose human germline engineering, but do not accept PGD or prenatal
screening for particular traits. Other opponents of human germline
engineering feel that although PGD can be (and prenatal screening
has been) horribly misused, they are justifiable for the prevention
of serious gene-related disease.
More on the Nash case:
<http://www.salon.com/health/feature/2000/10/05/bone_marrow/html>;
<http://www.independent.co.uk/news/UK/Science/2000-10/clinic051000.shtml>;
<http://dailynews.yahoo.com/htx/ap/20001003/hl/test_tube_brother_1.html>.
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III. NEWS AND POINTERS
1. New Bans on Human Genetic Modification in Japan and Netherlands
Very little media notice has been given to new prohibitions
on human
genetic modification in Japan and the Netherlands.
According to an October 6 Reuters report, the Japanese cabinet
has
approved a bill making it illegal to put a cloned human embryo
into
the womb of a woman or animal. Violators could be sentenced to
up to
ten years in prison and fined up to 10 million yen ($91,670).
These
provisions are stiffer than those called for in an earlier version
of
the bill, which was scrapped after opponents argued it was too
lenient.
Japan's Kyodo News agency said that the government will draft
separate
guidelines to allow research on cloned human embryos.
The Dutch government has introduced a bill into parliament
that would
ban human cloning, sex selection, and germline manipulation. The
bill
would also forbid scientists to create human embryos for research,
but
would allow them to use "surplus" embryos from in vitro
fertilization
clinics under strict conditions. The Dutch position is seen as
a middle
ground between the European Parliament's call to ban non-reproductive
cloning and the proposal of the UK government's advisors to allow
the
creation of human embryos by cloning in order to obtain embryonic
stem
cells. (See Issue 11 of this newsletter.)
British Medical Journal coverage of the Dutch legislation is
at
<http://www.bmj.com/cgi/content/full/321/7265/854/g>.
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2. Greenpeace Prevents Patents on Pig-Human Embryos
In early October, Greenpeace Germany exposed a patent application
at
the European Patent Office (EPO) for embryos produced by putting
human
DNA into pig eggs. The EPO then announced that it considered "certain
claims" in the application to be "contrary to morality."
Shortly
thereafter, the two companies that had filed the patent application
said they would abandon it, and would no longer include human
emryos
in their patents anywhere in the world.
The patent, filed by Massachusetts-based BioTransplant Inc.
and Stem
Cell Sciences (Australia), covered the cloning of human embryos
and of
mixed-species embryos from pigs, cows, sheep, and humans. It also
covered the genetic manipulation of those embryos. According to
the
application, company scientists had already produced pig-human
embryos.
The companies were presumably interested in non-reproductive
cloning
for the purposes of producing tissue or organ transplants for
patients
using their own cells, which would be immunologically compatible.
Greenpeace pointed out, however, that "[n]o specific concrete
medical
reasons were given....The experiments were performed mainly to
demonstrate that such nuclear transfer technology could be applied
to
humans as well as animals, with the intention to then obtain a
broad
patent on the technology used and on the embryos produced."
Greenpeace called for changing the European Union Patent Directive
to prohibit all patents on life. "The existing patenting
regime is
the driving force behind a kind of speculative research in the
rush
to claim ownership of new techniques," it said.
The Campaign Against Human Genetic Engineering, a British group,
condemned the patent application as "obscene." Coordinator
Dr.
David King said, "These technologies are turning human life
into
a commodity. Those who believe that genetic engineering of humans
is only a far-off threat should think again: companies are already
gearing up and intend to make monopoly profits in the process."
See <http://www.greenpeace.org/~geneng/highlights/pat/00_10_05a.htm>;
<http://www.users.globalnet.co.uk/~cahge>; <http://www.sunday-times.co.
uk/news/pages/sti/2000/10/08/stifgnaus01001.html>.
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3. Gelsinger wrongful death lawsuit names bioethicist Caplan
The family of Jesse Gelsinger, the 18-year-old who died last
September
in a gene therapy experiment at the University of Pennsylvania,
has
filed suit against the researchers and institutions involved in
running
the experiment: the university, two medical facilities, and Genovo
Inc.,
the biotech company founded by lead scientist James Wilson that
had a
stake in the successful outcome of the experiment. The lawsuit
accuses
the defendants of negligent, reckless, or fraudulent acts.
Gelsinger's death was followed by revelations of serious regulatory
violations and financial conflicts of interest in the Penn trial,
as well as in hundreds of gene therapy experiments nationwide.
(See
Issues 7 and 10 of this newsletter.)
Media coverage of the lawsuit focused on its inclusion of well-known
bioethicist Arthur Caplan, who advised the researchers on the
design
of the experiment. Caplan argued that the parents of sick infants
are
too desperate to provide true informed consent, and that the experiment
should therefore be conducted on relatively healthy adults. For
more
on Caplan's role, and on bioethicists' growing influence and financial
conflicts, see Arthur Allen, "Bioethics comes of age,"
<http://www.salon.com/health/feature/2000/09/28/caplan/index.html>.
In venues unrelated to the Gelsinger case, Caplan has often
argued
that human germline engineering is "inevitable." In
December 1999 he
wrote, "Before the next century is out, fetuses will no longer
need
their mother's womb for nourishment and growth. We will see many
children made by the artificial creation of embryos...This prediction
is 100 percent certain....There will be strong social pressure
to use
eugenics to improve children in order to minimize the social cost
of
disease and chronic disability. The rush to use eugenics will
be
amazing, with parents competing to give their kids the `best'
start
in life." See <http://www.msnbc.com/news/352113.asp>
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IV. RECENT EVENTS
1. California Cloning Committee Meets in Los Angeles
At their September 22 meeting in Los Angeles, the California
State
Legislature Advisory Committee on Human Cloning heard testimony
from
Lawrence Goldstein, UC San Diego, and from Glenn McGee, University
of
Pennsylvania. McGee is the author of "The Perfect Baby"
(NY: Rowman &
Littlefield, 1997), whose concluding chapter is titled "The
Not-so-
Deadly Sins of Genetic Enhancement." There was no public
testimony.
Goldstein's presentation focused on technical issues. He indicated
that he would like to see California's cloning legislation sunset
and
not be replaced, though he would not be "violently opposed"
to an
extension of the moratorium as long as it didn't get in the way
of
stem cell research.
McGee advocated what he called a "practical" approach
to reproductive
cloning that would allow different attitudes to cloning in different
jurisdictions, even within the state. He suggested that supervision
be handled by family court judges on a case-by-case basis. Committee
members pointed out that judges have had difficulties with surrogacy
cases, and argued that even if they did handle case-by-case questions,
they would need legislative guidance.
The next meeting of the Cloning Committee will be in San Francisco
in
January. No testimony is planned; instead the Committee will begin
consideration of its final report based on a draft outline to
be
written by Henry Greely, professor of law and co-director of a
program
in Genomics, Ethics, and Society at Stanford University.
This account is based on communications from Pete Shanks, who
attended
the Los Angeles meeting.
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2. Scientists, Activists, and Biotech Execs Debate Human Genetic
Modification at State of the World Forum
Panelists at the fifth annual State of the World Forum, held
in New York
in September, offered starkly divergent evaluations of human genetic
technology, with scientists and activists questioning biotech
executives'
predictions of medical miracles.
Among the panelists were "soft energy" scientist
Amory Lovins; Martha
Herbert, pediatric neurologist and member of the Council for Responsible
Genetics board; Judy Gobert, spokesperson for two Native American
tribes;
and Robert Lanza, vice president of Advanced Cell Technology (ACT),
the
company that claims to be "saving endangered species"
by cloning them.
ACT's Lanza claimed that the production of "designer babies"
will begin
soon: "We're close to being able to add 20 or 30 points to
your baby's
IQ, or an equivalent boost of their muscle mass...and who among
us
wouldn't say, `Yes'?"
Amory Lovins said, "We know that in larger ecosystems,
introducing
foreign agents upsets things in unpredictable and often unhappy
ways...
I feel the same way about putting bits of xeno-DNA, or even DNA
from
our species, into our genes." Lovins also pointed out that
the goal of
genetic engineering "is profitability, not biofitness."
Judy Gobert argued that patents on DNA should not be granted,
and
objected to industry or government scientists asking native Americans
to provide their own DNA for research purposes. Martha Herbert
argued
that human germline engineering is misguided, dangerous, and unethical,
and should be banned.
(Phillip Frazer, "Genetic medicine promises baby geniuses,
and
nightmares," <http://www.simulconference.com/public/sowf/sowf/
dispatches/dispatch29.html>.)
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V. UPCOMING EVENTS
1. Sessions on Human Genetic Modification at Bioneers 2000,
San Rafael,
California, October 20-22
Richard Hayes and Marcy Darnovsky of the Exploratory Initiative
on the
New Human Genetic Technologies, and Richard Heinberg, author of
Cloning
the Buddha, will speak at Bioneers 2000, San Rafael, California,
on
Friday, October 20 at 2:30 pm.
In addition, the Exploratory Initiative will host an organizing
and
strategy session on human genetic modification at 8 pm that evening,
and will be available at other times during the Bioneers conference.
For more information on Bioneeers 2000, which runs from October
20
through 22: <www.bioneers.org>; chisf@bioneers.org; phone
877-246-6337.
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2. "Preventing the Misuse of Genetic Technologies,"
New York Open
Center, Saturday November 11
Stuart Newman and J.P. Harpignies will host a free discussion
at the
New York Open Center, 83 Spring Street (near the corner of Broadway),
at 7:30 pm on Saturday November 11. The event is co-sponsored
by the
Open Center's Society, Ecology & Science program and the Council
for
Responsible Genetics.
>From the Open Center website <http://www.opencenter.org>:
"[M]any
voices in the scientific community and popular media describe
a
future of genetically `improved' children as being inevitable....Can
we...prevent a misguided rush into a Gattacca-like consumer-driven
eugenic society? Come find out about the growing global movement
to
prevent the abuse of genetic manipulation."
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3. "Made Not Born:" Anthology on Biotechnology Available Soon
"Made Not Born: The Troubling World of Biotechnology,"
edited by Casey
Walker and published by Sierra Club Books, will be in bookstores
on
October 23. The collection, which includes contributions from
Richard
Hayes, Stuart Newman, Richard Strohman, Wendell Berry, and Chris
Desser,
is based on a special issue of the literary and political journal
Wild
Duck Review, which Walker edits and publishes.
Sierra Club Books says that the anthology "will serve
as an introduction
to--and a springboard for public involvement in--one of the most
crucial
and perplexing issues of our times."
Copies of Made Not Born (and subscriptions to the journal)
can be
ordered through the Wild Duck Review home page <www.wildduckreview.com>.
The anthology will also be available at Bioneers 2000 through
Copperfield's Bookstore.
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4. Art Exhibits on Biotechnology
"Paradise Now: Picturing the Genetic Revolution"
is at Exit Art, 548
Broadway (between Prince and Spring), New York, until October
28. See
<http://www.exitart.org>.
An exhibit called "Unnatural Science" will be at
MassMOCA until April
15, 2001. See <http://www.massmoca.org/visual_arts/unnatural_science/
index.html>.
Other shows are planned at the Santa Barbara Museum of Art,
the
International Center of Photography in New York, and the University
of Washington's Henry Art Gallery in Seattle. (Jordan Lite, "Artists
Mine Genomic Issues," Wired News, May 13, 2000 <http://www.wired.com/
news/print/0,1294,36288,000.html>.)
Future issues of this newsletter will include more information
about
and reviews of these exhibits.
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VI. ABOUT THE TECHNO-EUGENICS EMAIL NEWSLETTER
This newsletter stems from the work of academics, activists,
and others
in the San Francisco Bay Area who are concerned about the direction
of
the new human genetic technologies.
We support technologies that serve the public interest. We
oppose
those--including human germline engineering and human cloning--that
foster inequality, discrimination, objectification, and the
commodification of human genes and tissues.
This newsletter is intended to alert and inform concerned individuals
about the new technologies and the techno-eugenic vision. For
at least
the next several months, the newsletter will be irregular (once
every
four to six weeks) and informal. We'd welcome feedback, and suggestions
about focus and format. A web site will be coming soon.
Marcy Darnovsky will moderate. Send submissions to her via
the email
address below.
Unless we hear from you, we'll keep you on this list. Please
let us
know if you don't want to receive the newsletter---we won't feel
rejected! On the other hand, feel free to forward it to others
who
may be interested, and encourage them to subscribe by reply to
Marcy.
If you're a new subscriber, let us know if you'd like to receive
back issues.
Marcy Darnovsky, Ph.D. Richard Hayes, M.A.
teel@adax.com rhayes@publicmediacenter.org