[CTRL] The Gods Among Us

Euphorix Sat, 27 Jan 2001 22:57:01 -0800

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POSTED AT 1:42 PM EST Saturday, January 27

Perfection but at what price?
By MICHAEL VALPY
>From Saturday's Globe
Scientists in Britain received parliamentary approval this week to create human
embryos for research into treating disease. In two words: therapeutic cloning.
It is the first legal green light given to the Western world's biomedical community
to actually create human life. The terms are stringent: The embryos must be
destroyed after 14 days; they must never be allowed to grow into human beings; a
select parliamentary committee is to come up with detailed regulatory controls
before the first research licences are granted.
Now, from the moral principles of Westminster's lawmakers, let's travel to this
month's issue of Wired magazine, the widely read periodical of the North American
software industry, a sort of New England Journal of Medicine for computer nerds. The
cover story is about the Creator and the Client. It is not fiction.
The Creator is described by writer Brian Alexander as "an intense dark-haired man in
his thirties [who] looks a little like Peter Lorre in The Beast With Five Fingers."
He has a PhD in molecular biology, a list of peer-reviewed publications, a research
job at a major U.S. university, an entrepreneurial spirit and a shortage of ethical
scruples. He has "just enough skill to make human clo
ning work," Mr. Alexander writes.
And he has attracted a customer � the Client � a businessman living in Western Europe
whose son died from disease a year ago. The Client found him by cruising the
underworld of the Internet.
The Client wants the Creator to clone his dead son. He has consulted experts and keeps
tissue samples from the body stored in liquid nitrogen and paraffin blocks. The
Creator has found an in vitro fertilization laboratory
that can do the work, with a compliant director skilled in the handling of human eggs
and the IVF embryo manipulations that closely resemble the techniques used in cloning.
At last report, Mr. Alexander writes, the Creator and the Client had fallen to
bickering over whether the Creator could guarantee success.
Then there is the story of the Quebec-based New Age cult, the UFO-worshipping
Raelians, and their project, Clonaid. They announced last year, through much salacious
press coverage around the world, that they had found a U
.S. couple ready to pay $500,000 to have their dead baby cloned from saved tissue.
The cult said it has the medical know-how to do the job. It, too, may have found the
Creator and his lab.
"The Creator's spirit," Mr. Alexander writes, "has been awakened by the historical
moment we're in right now, a convergence of under-the-radar pro-cloning agitation,
falling taboos, and the inexorable march of science."
Or, as Dr. Joseph Martin, the Alberta-born dean of Harvard University's school of
medicine, explains: "The technology isn't that difficult and it will happen probably
before we'd like it to."
Cloning of the monkey has already been done. So the possibility of reproducing
ourselves, humankind, within the next few years is really not a question of 'whether'
or 'if you can,' but a question of 'who does it.' "
And so here we have the chills travelling up the world's spine.
Hidden from view in corporate-financed research laboratories, human-cloning
experiments already may be well under way, Dr. Martin told a recent breakfast
gathering attended by some of the world's outstanding clinical and
basic-science researchers in genetics, immunology and molecular biology.
The Globe and Mail had invited the scientists to talk about the morals and ethics
required to frame the relentless advance of biomedical research.
Britain has now taken the step to the leading edge. The U.S. National Institutes of
Health has just begun to finance research using surplus human embryos from in vitro
fertilization clinics (manufacturing embryos remains
prohibited), which the new Bush administration is being strongly lobbied to halt.
The Canadian government, wishy-washy to a fault, twice has backed away from regulatory
legislation of any kind, relying on a voluntary moratorium by the biomedical community
that may well have served to drive research und
erground. In any event, Canadian scientists have described human embryo-cell research
in the country as having gone nowhere.
The publicly funded Canadian Institutes of Health Research (the reincarnated Medical
Research Council) has a committee working on research guidelines. A Health Canada
discussion paper given media attention this week says
the government may permit therapeutic cloning similar to the British model when it
finally gets around to making laws to govern human reproductive technology.
Religious groups, with the Roman Catholic Church in the forefront, immediately
announced their opposition.
A brief look at the science before we get to The Globe's breakfast:
Dolly the sheep was cloned in Scotland four years ago. This month, scientists
announced the cloning of ANDi the rhesus monkey (named for "inserted DNA") in Oregon.
Mice and other forms of life have been cloned in universi
ty and private labs around the world.
This is how it works: The nucleus is removed from a fertilized egg to be replaced by a
new cell nucleus from the tissue of the "parent" animal (or "brother" or "sister" �
the language hasn't yet found the right, comfortab
le word) in a process called somatic cell nuclear transfer. The new, cloned egg is
then grown into an embryo.
Within the embryo are stem cells, the body's master cells that go on to diversify into
organs, bones, nerves, muscles, skin and blood. Researchers want to understand, using
the knowledge of genetic codes, how stem cells c
an be grown into new organs and body parts that can replace those that are diseased or
genetically disordered.
In Britain, before the House of Lords passed amendments this week to the Human
Fertilisation and Embryology Act, scientists were restricted to research on
fertilization, contraception and congenital disorders using existi
ng, surplus embryos.
British researchers are still expected to rely on surplus embryos rather than to
create new ones. But the legal authority now exists, and the limits on research have
been lifted.
Against this backdrop is an engulfing debate over both the ethical issues of creating
life as "disposable organic material" � as one British church leader has termed it �
and the scientific issues of whether devoting so m
any resources to genetic research is going down the wrong path and raising invalid
public expectations.
And, of course, there is the worry about the Creator and for-profit corporate interest
in what can be done with our bodies.
To date, private companies, universities and charitable organizations working to
eradicate various diseases and disorders have filed patents on 127,000 genetic bits of
the human body � the gene sequences and chemical code
s that are the software of life. The race to buy life, it has been called.
The scientists who met Globe journalists for breakfast were in Toronto to serve as
jurors for medical science's prestigious Gairdner Award, known as the Baby 'Bel
because many winners subsequently receive the Nobel Prize.

The group included Harvard medical dean Joseph Martin; Australian immunologist Peter
Doherty; Sir Keith Peters, regius professor of physic (medicine) at Cambridge
University; Harvard surgeon Judah Folkman; Judith Hall, cl
inical geneticist at the University of British Columbia; and Alan Bernstein, president
of the Canadian Institutes for Health Research, the pre-eminent agency for funding
medical research in Canada.
John Dirks, president of the Gairdner Foundation and former dean of medicine at
University of Toronto, was also at the breakfast.
The job of the Gairdner Award jurors, Dr. Dirks said, "will be to decide what ideas
are important and what will last." It will be interesting to speculate on what values
are embodied in the selection of this year's winner
, whose name will be announced this spring.
What they had to say, in sum, was this:
The biggest obstacle to growing cloned embryos into human beings is that there is not
a mass market for it. Yet. Which is not the same as saying there isn't a market.
It is not the role of scientists to determine the ethical limits to research or the
application of genetic knowledge to the delivery of public health. That is the role of
legislatures and the public. The job of scientists
, Dr. Bernstein said, is to be canaries in the coal mine, saying: "Hey, there's an
issue coming up here, and we should have a full discussion."
The public and the news media generally have an inaccurate and exaggerated � the best
word might be naive � idea of where genetics research is leading and what can be
accomplished in treating and eradicating disease and o
ther human imperfections.
The debate over stem-cell research will probably end, or at least become more muted,
once researchers learn how to work usefully with adult stem cells and no longer need
embryos.
The primary ethical issue for medical scientists is not about genetics and cloning but
the rapidly widening gulf between the developed and developing worlds in the
availability of medical knowledge and treatment.
The market for genetics research will be created by the demand for genetically
engineered human tissue (preferably a person's own) or genetic pharmacology to replace
or compensate for diseased and disordered parts of the
body. To that end, private corporations have invested billions of dollars in
biotechnology and applied for tens of thousands of patents (one French company alone
holds more than 38,000).
But the reality, Sir Keith Peters said, is that the market for cloning embryos for
human life is not absent.
"In most Western societies, there's a tremendous amount of hand-waving about how human
cloning is not going to happen, it's absolutely unacceptable, the society will reject
it.
"And then I ask the question of my friends: 'Okay, your only child, age 21, is killed
in a motor accident and you had a chance to take a little tissue from him or her and
you're beyond reproductive age yourself almost cer
tainly � would you like to have another child, [because we] have this technology? And
I've yet to come across an answer no.
"I think there are all kinds of reasons why we should not do that. But when people are
faced with it as a real possibility, the answer is yes."
Why should science not do that? Because genetic determinism, however much it comes
eventually to be understood, will never replicate a human being.
The parents who want their dead 21-year-old cloned will get a 21-year-old, Sir Keith
said. But they won't get back the 21-year-old child who died.
Patricia Baird, the University of British Columbia geneticist whose report from the
1993 Royal Commission on New Reproductive Technologies has been left by Ottawa to
gather dust, pointed out in a public Vancouver lecture
this month that genetic constitutions � even if they could be exactly replicated � can
never overcome human nurture, human experience and the million and one other
environmental factors that from conception on give shape
to a human being.
What of genetic manipulation, or the application of transgenic technology? What do
scientists say about therapies to deal with, for example, the genetic mutation for
cystic fibrosis identified in a human embryo?
The CF gene has been known for 11 years, since it was discovered by University of
Toronto geneticist Lap-Chee Tsui.
To date, there is no proven gene-based therapy to correct it, to replace the mutated
gene with one that is not.
Dr. Bernstein asked whether a couple wanting a child free of the mutations would be
willing to undergo all the required genetic manipulations, most of which would fail.
(Maybe one in 50 would succeed, Dr. Doherty said. It
took 300 tries to get Dolly.)
Dr. Bernstein posed further questions. Should genetic screening for the mutation
become required? Do we move to some sort of societal consensus that all fetuses
identified with the mutation should be routinely aborted?
And what would that say to people living with cystic fibrosis -- the people with a
mutation that wasn't identified?
To date, 950 mutations of the cystic-fibrosis gene have been identified, only 30 of
which are routinely screened for in laboratories. In 10 to 15 per cent of
affected patients, the mutation is not identified either during a natural pregnancy or
before an in vitro embryo is implanted.
Dr. Bernstein said: "It's not up to the research community to decide whether fetuses
with the cystic fibrosis gene should be aborted. It's for the public through their
lawmakers to either regulate or legislate."
Those questions, Dr. Doherty said, rest with the community values and ethical
considerations in a particular society.
The scientists at The Globe breakfast spoke enthusiastically about revolutionary
advances in genetics-based medical knowledge. They talked about
developments in genetic pharmacology leading to drugs that will compensate for genetic
disorders.
They predicted major therapeutic advances in the next few years for cancer, diabetes,
muscular dystrophy, coronary disease and neurological disorders such
as Alzheimer's.
They also repeatedly tempered their enthusiasm with warnings against unreal public
expectations.
"One of the things we've learned from the genetic revolution...is the uniqueness of
every individual and how much environment plays a role," Dr. Hall said.
"So although we can talk broadly about Alzheimer's, there are major environmental
factors and there will be individual susceptibilities because of the interaction of
various biochemicals."
Dr. Baird, in her public lecture, put the issue succinctly with two examples: There
are 256 different identified risk factors for heart disease, and a B.C. study of one
million individuals followed from birth to age 25 fo
und that single-gene disorders occur in only 3.6 per 1,000 live births.
"The vast majority of illnesses in humans are the result of complex interactions, over
time, between their genetic constitutions and [their environment]," she said. "The
evidence is overwhelming that the determinants of t
he common chronic diseases of modern life are complex, interrelated, act over time and
are embedded in a social context."
Which suggests that the breakthroughs in the treatment of humanity's horrible
disorders are not going to come from genetic discoveries alone but from a partnership
of medical scientists doing both basic and clinical resea
rch.
Harvard's Judah Folkman said: "I continue to be fascinated by the absolute, unexpected
and surprising discoveries that come when clinicians work with basic scientists which
would not come at all if their work was separate
."
He cited as an example the isolation by basic researchers of an enzyme in hemangiomas
� benign facial tumours that appear at birth and usually disappear by age 7 or 8.
Clinical researchers then discovered that these tumou
rs destroyed thyroid hormones and are a leading factor in causing mental retardation
in children.
Then Dr. Folkman spoke of the moral issue that is most on his mind: "All our arguments
about cloning and ethics will pale before the fact that we will be judged by not
worrying about places...that can't afford the treatme
nts we discover."
He recalled one of his medical residents who returned from working in a children's
hospital in New Delhi. The resident described how every morning there were 20 children
on the hospital's doorstep who had died overnight f
rom simple diarrhea.
"They don't do the fancy surgery we do," Dr. Folkman said. The assaults on the
frontiers of medical science have not been matched by assaults on miserly foreign aid.
Sir Keith said the endemic presence of diseases such as AIDS in Africa � where, in
some countries, 40 per cent of women arriving in clinics and hospitals for childbirth
are HIV-positive � puts all other medical ethical is
sues on the back burner.
(In an article in The Globe and Mail yesterday, Stephen Lewis, former Canadian
ambassador to the United Nations, called AIDS in southern Africa one of the greatest
human tragedies of our age on which the West is willfully
turning its back.)
Dr. Doherty spoke of recently visiting the University of California's veterinary
school and seeing dogs on dialysis at a cost of $7,000 a year. "Think about it. It's
these people's money. They could just as well spend the
money on a new Cadillac every year, but they choose to spend it on their dog.
"Ethically, it's appalling. Look at AIDS. In this country and in Australia and in the
U.S., everyone gets triple drug therapy. In Africa,...they can't afford these drugs."
At a guess, there will be more public fuss in the West about the Creator.
The panel
Dr. Alan Bernstein has been a molecular and medical genetics professor at the
University of Toronto since 1984. He has made key contributions to the study of
embryonic development, hematopoiesis, cancer, the cardiovascula
r system, gene therapy, and mammalian development. He is the president of the Canadian
Institutes for Health Research.
Dr. Peter Doherty, who originally studied veterinary medicine in Australia, is now
chairman of the department of immunology at St. Jude Children's Research Hospital in
Memphis and a pathology professor at the University o
f Tennessee, Memphis. He won a Gairdner award in 1986 and the Nobel Prize for
physiology in 1996.
Dr. Judah Folkman developed the first implantable pacemaker and discovered
anti-angiogenesis, the eradication of tumours by cutting off their blood supply.
Before devoting himself to research, the Cleveland native became
a professor of surgery at Harvard Medical School in 1967 and served as
surgeon-in-chief at Children's Hospital Medical Center in Boston for 14 years. He
received the Gairdner in 1991.
Dr. Judith Hall is a clinical geneticist and the head of the pediatrics departments at
the University of British Columbia and B.C.'s Children's Hospital. Born in Boston, her
main areas of research are human congenital ano
malies, including the genetics of short stature and monozygotic (identical) twins. She
is an officer of the Order of Canada.
Dr. Joseph Martin, born in Bassano, Alta., is the dean of Harvard Medical School. His
specialties include the molecular genetics of neurodegenerative disease. His early
work led to the discovery of the genetic marker for
Huntington's disease. He won the Abraham Flexner Award for distinguished service to
medical education in 1999.
Sir Keith Peters is the Regius Professor of Physic (medicine) at the University of
Cambridge. His research interests include diseases of the kidneys and blood vessels
and immunological mechanisms in disease. He is a fello
w of Christ's College, Cambridge, and served on the Advisory Council on Science and
Technology from 1987 to 1990.
The Gairdner Foundation
Dr. John Dirks is president of the Toronto-based Gairdner Foundation, which presents
an annual international award for excellence in medical science. A native of Winnipeg,
he became the dean of medicine at U of T in 1987
and is currently a professor emeritus of medicine there. His work is concentrated in
renal pathophysiology. He has served on the Medical Research Council of Canada and
received the medical award of the Kidney Foundation o
f Canada in 1985.

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