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Welcome to the
Techno-Eugenics Email Newsletter
Number 10
August 4, 2000
Supporting genetic science in the public interest
Opposing the new techno-eugenics
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This is Issue Number 10 of the Techno-Eugenics Email Newsletter,
as far as we know the only on-line newsletter focused on the
politics of the new human genetic and reproductive technologies.
If you're receiving this newsletter for the first time, please
see the instructions for subscribing and submitting items
at the
end of this message.
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CONTENTS
I. AFTER THE SEQUENCING ANNOUNCEMENT
1. The New Politics of Human Genetics: A Comment and a Request
2. Collins and Venter on Human Germline Engineering
3. Noteworthy Post-Announcement Media Accounts
II. NEWS AND POINTERS REGARDING TECHNO-EUGENICS
1. "Human Genetics Calendar 2000 to 2040" by Corporate
Futurist
Joseph Coates
2. Lee Silver on "Type I" and "Type II"
Enhancements
3. Stuart Newman on the Hazards of Developmental Gene Modification
4. Support for Genetic Discrimination
5. Behind the Jesse Gelsinger Story
6. Reporting Rules for Gene Therapy Experiments to be Loosened
III. ABOUT THE TECHNO-EUGENICS EMAIL NEWSLETTER
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I. AFTER THE SEQUENCING ANNOUNCEMENT
1. The New Politics of Human Genetics: A Comment and a Request
Since the announcement in June of a "working draft"
of the human genome,
hardly a day has passed without a report about some new development
in
genetic technology, business, or policy. When this newsletter
was begun
not quite a year ago, references to human genetic technologies
in the
popular media--and in everyday conversation--were few and far
between.
Now they are commonplace.
Social, political, and financial momentum are fast gathering
behind the
increasing technical powers and cultural clout of genetic scientists.
The coming months and few years are a critical juncture for efforts
to
shape public discussion and policy on the new human genetics--and
to
ensure that these technologies be developed in ways that foster
democracy,
justice, ecological soundness, and human dignity.
We will continue to publish summaries of and pointers to developments
regarding the social and political dimensions of the new human
genetic
and reproductive technologies, and would welcome your help in
tracking
them. We are most interested in items that inform our opposition
to
human germline engineering and human cloning, and our support
for
effective social oversight of other human genetic and reproductive
technologies. Please send items to Marcy Darnovsky at <teel@adax.com>.
Thanks!
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2. Collins and Venter on Human Germline Engineering
One impetus behind the last-minute reconciliation between the
private
Celera Genomics Corporation and the public Human Genome Project
was the
rivals' mutual interest in popular support for genetic science
and
technology. An unseemly feud would have marred their effort to
present
the "mapping" of the human genome as a noble and high-minded
endeavor.
Thus the key scientific figures were also careful to reassure
the public
about genetic discrimination, privacy concerns, and other potential
threats
posed by emerging genetic technologies. And in a little-noticed
AP report,
Celera's Craig Venter and Human Genome Project director Francis
Collins
responded to a question about human germline engineering.
Collins' statement was: "There are many safety issues
involved in germline
manipulation....I know of no responsible investigator who wants
to go into
the germline because of the real safety and ethical issues."
Venter then
commented, "Until we thoroughly understand how this biology
works, I don't
know of anyone who would do this work."
Real opposition to human germline engineering by Collins and
Venter would
be enormously welcome. Unfortunately, formulations like Venter's
are
ambiguous. Will he support "going into the germline"
when he decides
that the biology is understood?
Nor are past records like that of Collins reassuring. In 1997,
he wrote
an enthusiastic foreword for Playing God?, a book by human germline
engineering advocate Ted Peters (New York: Routledge, 1997).
And in
a December 1999 interview, Collins opened the typical "not
at this time"
loophole, saying that "for the time being, the focus is not
on germline
therapy." See <www.washingtonpost.com/wp-srv/liveonline/health/
healthtalk/health122899.htm>.
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3. Noteworthy Post-Announcement Media Accounts
Two post-announcement articles that sound a clear alarm about
the
prospect of human germline engineering were written by Ralph Brave.
"Unnatural Selection: Will Unlocking the Human Genome Create
an Evolution
Revolution?" appeared in the June 21-June 27 Baltimore City
Paper. See
<www.citypaper.com/2000-06-21/feature.html>.
For Brave's "Building Better Humans," see <www.salon.com/health/feature/
2000/06/27/germline/print.html>.
An op-ed by Stuart Newman, developmental biologist at New York
Medical
College and chair of the Human Genetics Committee of the Council
for
Responsible Genetics, appeared in the July 25 Saint Louis Post-Dispatch.
"Don't Try to Engineer Human Embryos" concludes, "Genetic
manipulation of
future generations is a path we as a species have not yet taken.
Science
and history provide us with ample reason to refrain from implementing
a
technology that will be portrayed by some as desirable or inevitable,
but
in fact would be both perilous and irreversible." See
<www.postnet.com/eaf.nsf/ByID/86256739007E11318625692700396F40>
or
the archives at <www.postnet.com>.
Several articles questioned whether the announcement of the
genome
sequencing was "hype." An example is Keay Davidson's
"Sticking a
pin in genome mappers' balloon," San Francisco Examiner,
July 5, 2000.
To access, go to <www.sfgate.com> and use the search function
on
"staff-written articles."
Others enthused about human germline engineering or declared
its
inevitability. In a 16-page section on the human genome in its
July
1-7 issue, The Economist predicted, "People now alive will
witness...
the birth of people whose biology has been optimised from conception
to be resistant to disease and old age. They may even see a world
where children are tailored to the wishes of their parents."
See
<www.economist.com/ editorial/freeforall/20000701/index_survey.html>
and click on "Future perfect?"
The New Republic (July 10 & 17) editorialized, "Subsequent
generations,
perhaps as soon as our grandchildren's, may be known not as Homo
sapiens
but as Homo geneticus or Homo Glaxo Wellcomus. For good or ill,
people
are about to take over the role of God and nature in determining
the
course of evolution." See <www.tnr.com/071000/editorial071000.html>.
In a Wall Street Journal column titled "A Milestone in
the Conquest of
Nature" (June 27), Francis Fukuyama wrote, "Once we
better understand the
genetic sources of behavior....[t]he way is then open to superceding
the
human race with something different....Parents want the best for
their
children, whether it is a matter of height, intelligence, looks
or social
adjustment. Who is going to tell them this is wrong? Biotechnology,
we
might say, will help the human race get better."
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II. NEWS AND POINTERS REGARDING TECHNO-EUGENICS
1. "Human Genetics Calendar 2000 to 2040" by Corporate
Futurist
Joseph Coates
A conference called "Humans and Genetic Engineering in
the New Millenium--
How are we going to get `Gen-Ethics' just in time?" was held
in November
1999 by the Danish Council of Ethics and Copenhagen University.
Three
papers prepared for that conference, by Joseph Coates, Lee Silver,
and
Darren Shickle, have now been published and are available on-line
at
<www.etiskraad.dk/publikationer/genethics/ren.htm>.
Coates' paper begins, "The reality must be faced squarely
that we are
the first species to be able to directly intervene in shaping
its own
evolution....Our choice is not yes or no. Our choice is to intelligently
or stupidly manage that capability." He ends with "an
anticipated
calendar of events on the immediate genetic horizon." Here
are excerpts:
2000-2015 Expanding knowledge of multiple gene interactions
and the
associated disorders...
2007-2025 Upper middle class are first into genetic enhancement,
that is, elimination of nonmedical or nuisance conditions--
overweight, short stature, etc....
2025 Growth in genetic servicing doubles every three years
in
the United States. By 2022, 65% of children are genetically
serviced, 95% of them for diseases or disorders and
5% for
enhancement. 12% of interventions alter the germ line.
2028 Enhanced people are starting to form social groups
and
affinity groups....MENSA has a rapidly growing subgroup
called MENSA-E for those with IQs above 160. The Inter-
national Olympics Committee is discussing a special
Olympics
for the physically enhanced...
2035 The anti-genetics movement has 16 million registered
members
(Americans for God's Way) and enjoy support by 27%
of adults...
2038 Citizens refusing to have a genetic inventory of their
minor
children under the Olsen Act will have their taxes
raised by
30% and be double billed for genetically-based disorders
when
their children are treated for them.
Coates is a principal of Coates & Jarratt, whose slogan
is "The Future
is Our Business." The firm has worked for "44 of Fortune's
1999 top
100 companies," as well as the American Association for the
Advancement
of Science, Sandia National Laboratories, the U.S. EPA, the CIA,
and the
National Security Agency. See <http://coatesandjarratt.com>.
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2. Lee Silver on "Type I" and "Type II" enhancements
In an essay written for the same conference, Lee Silver describes
"Type I"
genetic changes--"those that will provide the embryo with
a gene that
other people get naturally"--and "Type II" enhancements,
"those that have
not appeared previously within the human population."
Silver continues: "The use of genetic enhancement could
greatly increase
the gap between `have's' and `have-not's' in the world. The gap
may
emerge initially between classes within a society. But, if the
cost of
reprogenetic technology follows the downward path taken by other
advanced
technologies like computers and electronics, it could become affordable
to the majority members of the middle class in Western societies.
Ultimately, Type II genetic enhancements--which provide new non-human
genes to children--will become feasible, and with Type II enhancements,
there really are no limitations to what is possible.
"When this happens, the social advantage that wealthy
societies currently
maintain could be converted into a genetic advantage. And the
already
wide gap between wealthy and poor nations could widen further
and further
with each generation until all common heritage is gone. A severed
humanity could very well be the ultimate legacy of unfettered
global
capitalism.
See <www.etiskraad.dk/publikationer/genethics/ren.htm>.
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3. Stuart Newman on the Hazards of Developmental Gene Modification
The July issue of GeneWatch, the newsletter of the Council
for Responsible
Genetics, includes an article by Stuart Newman titled "The
Hazards of Human
Developmental Gene Modification." Newman writes, "The
hazards of germline
transmission of DNA modification are no longer speculative; the
literature
on transgenic animals contains numerous examples.
"[N]o amount of data from laboratory animals will make
the first human
trials [of germline manipulation] anything but experimental....[W]here
the life of an existing person is not at issue, and the procedure
is
inherently experimental--threatening to profoundly alter the biology
of
the developing individual--contraindication on the basis of safety
or
unpredictability of outcome (which may be counterbalanced when
a life is
at stake) becomes an ethical contraindication as well."
See <www.gene-watch.org/newman.html>.
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4. Support for Genetic Discrimination
New York Times Magazine columnist Andrew Sullivan has decided
that genetic
discrimination is a good idea. Under the title "Promotion
of the Fittest"
(July 23, 2000), Sullivan writes, "Like most notions that
command almost
universal assent, the proposed ban on genetic discrimination makes
far
less sense the more you think about it....genetic discrimination,
however
troubling, is both rational and inevitable. And the sooner we
get over
our hand-wringing, the better."
Meanwhile, a reporter for the Canadian National Post found
a number of
insurance industry representatives who acknowledge that they would
use
genetic data to discriminate. Laura Landon reports, "A top
official with
one of Canada's largest insurance companies says his firm would
use
individual genetic information when assessing client risk, should
it
become available--and predicts most of the industry would follow
suit."
Another official, a senior advisor with the Canadian Life and
Insurance
Association, which represents most of Canada's insurance industry,
argued
that genetic testing is not now "sufficiently predictive
to be of great
value to insurers," but that it is not "different from
other medical
information." Genetic data, he said, is "simply part
of the health
history." ("Insurer says industry would use genetic
data," July 6, 2000.)
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5. Behind the Jesse Gelsinger Story
In the Spring 2000 newsletter of the National Association of
Science
Writers, Washington Post reporters Deborah Nelson and Rick Weiss
discuss
their investigation of the gene therapy experiment at the University
of
Pennsylvania in which Jesse Gelsinger died.
"How We Uncovered the Hidden Fatality in a Clinical Trial"
explains that
the two reporters learned of the death almost serendipitously,
in the
course of a different investigation. They go on to recount how
they
discovered that:
o the lead investigator, James Wilson, had a clear financial
conflict
of interest in the experiment--despite his initial assertion
to
Weiss that this was not the case;
o the deaths of monkeys treated with a viral vector similar to
the one
that killed Gelsinger had been omitted from the consent form
that the
young man had signed--though the approved version of the consent
form
had included it;
o four previous volunteers in the trial had suffered adverse
effects so
serious that the study should have been halted--but that the
problems
had not even been reported to federal regulators.
National Association of Science Writers, PO Box 294, Greenlawn,
NY 11740,
phone: 631-757-5664.
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6. Reporting Rules for Gene Therapy Experiments to be Loosened
Washington Post writer Rick Weiss reports that the National
Institutes of
Health Recombinant DNA Advisory Committee (RAC), which oversees
human gene
therapy experiments, has endorsed easing rules that require investigators
to immediately report serious illnesses or deaths among participants.
("NIH Panel Backs Easing Of Gene Therapy Rules," June
30, 2000.)
The recommended rule change "would allow researchers to
wait as long as a
year before reporting...all such `adverse events.'" The
move comes less
than a year after the death of Jesse Gelsinger and subsequent
revelations
that "gene therapy researchers had in recent years failed
to report
promptly, as required, more than 650 serious adverse events among
volunteers in gene therapy experiments."
Some patient advocates "lambasted" the plan "as
a case of bringing lax
researchers into compliance by merely loosening the rules."
The lawyer
representing Paul Gelsinger, Jesse's father, also criticized the
move.
See <www.washingtonpost.com/wp-dyn/articles/A23297-2000Jun29.html>.
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III. ABOUT THE TECHNO-EUGENICS EMAIL LIST 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