June 19, 2004
What is the purpose
of medicine? The definition of health?
The Case Against
Perfection,
by Michael J. Sandel
What's wrong with designer
children, bionic athletes, and genetic engineering
“Breakthroughs in
genetics present us with a promise and a predicament. The
promise is that we may soon be able to treat and prevent a host
of debilitating diseases. The predicament is that our newfound
genetic knowledge may also enable us to manipulate our own
nature—to enhance our muscles, memories, and moods; to choose
the sex, height, and other genetic traits of our children; to
make ourselves ‘better than well.’ When science moves faster
than moral understanding, as it does today, men and women
struggle to articulate their unease. In liberal societies they
reach first for the language of autonomy, fairness, and
individual rights. But this part of our moral vocabulary is ill
equipped to address the hardest questions posed by genetic
engineering. The genomic revolution has induced a kind of moral
vertigo.
“Consider cloning.
The birth of Dolly the cloned sheep, in 1997, brought a torrent
of concern about the prospect of cloned human beings. There are
good medical reasons to worry. Most scientists agree that
cloning is unsafe, likely to produce offspring with serious
abnormalities. (Dolly recently died a premature death.) But
suppose technology improved to the point where clones were at no
greater risk than naturally conceived offspring. Would human
cloning still be objectionable? Should our hesitation be moral
as well as medical? What, exactly, is wrong with creating a
child who is a genetic twin of one parent, or of an older
sibling who has tragically died—or, for that matter, of an
admired scientist, sports star, or celebrity?
“Some say cloning is
wrong because it violates the right to autonomy: by choosing a
child's genetic makeup in advance, parents deny the child’s
right to an open future. A similar objection can be raised
against any form of bioengineering that allows parents to select
or reject genetic characteristics. According to this argument,
genetic enhancements for musical talent, say, or athletic
prowess, would point children toward particular choices, and so
designer children would never be fully free….”
The Atlantic Monthly – April 2004
Should we make better
humans, or should we simply make humans better?
The Case Against
Perfection—
An Audio Interview
with Michael Sandel and Dr. Gregory Stock, from NPR
Michael Sandel is
the Bass Professor of Government at Harvard College and author
of “The Case Against Perfection” (The Atlantic Monthly).
Dr. Gregory Stock
is Director of the Program on Medicine, Technology and Society
at UCLA's School of Public Heath
“It seems parents
today will do anything to give their kids an edge. From
enrolling Johnny in a top-ranked nursery school, to arranging
SAT tutors for Samantha. Now some parents are contemplating that
next step, deciding that giving their kids the best of
everything also means giving them the best genes.
“Defenders of this
kind of genetic enhancement say technology makes it possible to
choose the sex, and alter the height—even the personality—of a
child, so why not take advantage of it. After all, who wouldn’t
want their child to be a little stronger, a little smarter?
Critics say the focus on designer children is leading society to
the edge of slippery slope called eugenics.”
wbur.org – April 28, 2004: To hear this stimulating
interview, link to the WBUR website and then click
on the “listen to the show” button.
Bioengineering a cow to
give medicine in her milk....
Cows Immune to
BSE Near Reality
“A major advance
towards producing prion-free cows that would be immune to mad
cow disease has been made by researchers at companies in the US
and Japan.
“Their principal aim
is to make genetically modified cattle that produce
pharmaceuticals in their milk. But the companies hope that also
making the animals resistant to BSE (bovine spongiform
encephalopathy) will reassure consumers.
“The researchers
have now achieved the considerable feat of creating cell lines
which have both copies of the cow’s PrP gene switched off. The
PrP protein can be switched to an infectious state by contact
with a mutated prion. This switch causes prion diseases such as
BSE in cows and variant Creutzfeldt Jakob Disease (vCJD) in
humans.
“Making live animals
from these cell lines should be relatively straightforward using
cloning techniques similar to those that created Dolly the
sheep.
“The companies say
they have no intention of producing prion-free animals destined
for human consumption. Instead they want to assuage public fears
about pharmaceuticals derived from cow’s milk, even though the
process used to extract proteins from milk has already been
shown to remove prion contamination….”
NewScientist.com – June 1, 2004
“Harvesting embryos” in
Britain....
Britain Opens
Stem-cell Bank
The world's
first national repository opened this week north of London,
angering anti-abortion groups.
“Scientists say it
could change modern medicine. Opponents dismiss it as playing
God, the ethical equivalent of Nazi death-camp experiments.
“Stem-cell research
– which involves exploring the use of cells as possible
therapies for a range of diseases – is nothing if not
contentious, and this week Britain moved into the heart of the
controversy by setting up the world’s first ‘bank’ for storing
and distributing the tiny fragments of proto-life.
“The idea is to
provide a repository for these scientifically valuable stem
cells that researchers the world over can ‘withdraw’ and use
without having to go through the scientific and legal hurdles of
generating their own.
“The UK Stem Cell
bank, based at a facility just north of London, could help
accelerate therapies for a wide range of genetic disorders and
regenerative treatments. The bank, set up with $4.6 million of
state money, will position Britain at the forefront of the
science, capitalizing on its long history of pioneering work in
genetics and its robust legal, regulatory, secular, and
institutional framework.
“But opponents say
the process of creating embryos only to exploit them for
therapeutic purposes is abhorrent. ‘We believe evil should never
be done even though good may come of it,’ says Josephine
Quintavalle of the ProLife Alliance in London. ‘Plenty of good
[scientific] ideas came from the extermination of victims of
Nazi concentration camps.’
“Stem-cell research
involves harvesting embryos within the first two weeks of their
creation, when young cells have the potential to develop into
any organ. Researchers hope to use the cells both to ‘grow’
replacement organs and identify genetic imperfections that lead
to illnesses like Huntington’s disease or Alzheimer’s. Most
embryos harvested in this fashion are ‘spare’ matter from in
vitro fertilization (IVF) programs.
“But the process of
producing stem cells is so laborious and time-consuming that
only a few dozen ‘lines’ exist in the world at the moment.
“The bank, based at
Britain’s National Institute for Biological Standards and
Controls, will make this highly limited resource much more
widely available, by culturing the stem-cell lines ‘deposited’
by researchers and systematically distributing them to licensed
scientists around the world….”
The Christian Science Monitor – May 21, 2004
Developing the brain-computer interface....
Mind Over Video
Game
Researchers: Patients control video with
brainpower alone
“Using thought alone
and with some electrodes placed on the surface of the brain,
four volunteers were able to control a video game, U.S.
researchers reported Monday.
“Simply by thinking
the word ‘move’, the volunteers played the simple video game,
the researchers reported.
“‘We are using pure
imagination. These people are not moving their limbs,’ said Dr.
Eric Leuthardt, a neurosurgeon at Barnes-Jewish Hospital in St.
Louis who worked on the study.
“Their findings add
to work being done at several centers and are aimed at finding
ways to help people control computers or machines using
brainpower alone. Potentially, people paralyzed by disease or
accidents could use such devices to work, read, write and even
possibly to move around….
“‘These electrodes
are placed on peoples’ brains on a routine basis for seizure
localization,’ Leuthardt said in a telephone interview.
“The patients have
their skulls opened and the electrodes placed on the surface of
the brain to find out where their seizures are originating, so
the connections in that area can be cut in the hope of a cure….
“‘After a brief
training session, the patients could play the game by using
signals that come off the surface of the brain,’ added Moran.
‘They achieved between 74 and 100 percent accuracy, with one
patient hitting 33 out of 33 targets correctly in a row….”
CNN.com – June 15, 2004
To read the technical
paper mentioned in this article, please link to the
Journal of
Neural Engineering (requires free registration - “A
brain–computer interface using electrocorticographic signals in
humans”).
Caring for “the least
of these”....
10-Ounce Baby
Grows Up, Goes Home
“Just five months
ago, Zoe Koz fit into the palm of her father Eric’s hand. Born
at only 27 weeks, she weighed less than 11 ounces and was one of
the world’s smallest babies ever born.
“On Wednesday, Koz
went home with her family, and now weighs more than 6 pounds.
“‘I'm feeling
excitement – I'm feeling relief,’ Eric Koz said. ‘Not that I
didn’t mind it here in the hospital, but at least I can go home,
and be with her at home, and do my things with her at home.’
“Kim Vatis from
NBC5, our sister station in Chicago, reported on Zoe’s release
from Naperville’s Edward Hospital, where Zoe has been since her
birth in January. Now, Zoe starts life at her Plainfield home.
She is still on oxygen, Vatis reported, but that is expected to
last only a few months. She is also eating formula, now that she
is nine times her birth size. Vatis reported that Zoe recently
had surgery on her underdeveloped eyes, and that doctors said
they will closely monitor Zoe over the next few years.
“Zoe’s mother,
Tammy, had lupus, which is an autoimmune deficiency disease.
That caused some problems with the placenta, which put Zoe’s
birth at risk, Vatis reported….”
WTVJ-TV – Miami,
Florida/MSNBC.com – June 10, 2004
The politics and the
science of embryonic stem cell research....
Cell Wars,
by Wesley J. Smith
The Reagans’
suffering and hyped promises
“Opponents of human
cloning and federal funding of embryonic-stem-cell research are
being fast marginalized by a myth that cloning will be an
immediate panacea to the ravages of degenerative disease and
disabling injury. The intensity of belief in science as savior,
combined with a desperate desire that it be so, has become so
fervent that faith in this research has come to resemble a
secular religion. And now, supporters of cloning for biomedical
research are using the death of Ronald Reagan from complications
of Alzheimer’s disease as a bellows to blow the political winds
in their favor.
“Take New York Times
political columnist William Safire as just one example. This
week, in a column he named ‘Reagan’s Next Victory,’ Safire urged
President Bush to open the federal-funding spigots to
embryonic-stem-cell research and, more ominously, to legalize
research into human cloning as a medical treatment (while still
outlawing the creation of cloned children). In doing so, he
summarily dismissed the prospect for cures being derived from
adult-stem-cell and related research — as cloning proponents
almost always do — writing: ‘Some argue that we should see if
adult stem cells may someday do the regenerative trick. But
“someday” doesn’t help today’s victims.’
“Safire has it
completely backwards. Cloning is in its embryonic stage. Even if
it could be used as an efficacious treatment (though that is a
gargantuan ‘if’), its success would be a decade or more away.
But adult-stem-cell and related tissue therapies are already
treating human maladies. Indeed, ignored by Safire and other
advocates, the science is moving forward at an exhilarating pace
both here and abroad in animal and human studies….”
Posted at The Discovery Institute (Originally published on
National Review Online,
June 8, 2004)
Exposing the
distortions of the embryonic stem cell debate....
Stem Cells An
Unlikely Therapy for Alzheimer's, by Rick Weiss
Reagan-Inspired Zeal For Study Continues
“Ronald Reagan’s
death from Alzheimer’s disease Saturday [June 6] has triggered
an outpouring of support for human embryonic stem cell research.
Building on comments made by Nancy Reagan last month, scores of
senators on Monday called upon President Bush to loosen his
restrictions on the controversial research, which requires the
destruction of human embryos. Patient groups have also chimed
in, and Senate Majority Leader Bill Frist (R-Tenn.) on Tuesday
added his support for a policy review.
“It is the kind of
advocacy that researchers have craved for years, and none wants
to slow its momentum.
“But the
infrequently voiced reality, stem cell experts confess, is that,
of all the diseases that may someday be cured by embryonic stem
cell treatments, Alzheimer’s is among the least likely to
benefit.
“‘I think the chance
of doing repairs to Alzheimer’s brains by putting in stem cells
is small,’ said stem cell researcher Michael Shelanski,
co-director of the Taub Institute for Research on Alzheimer’s
Disease and the Aging Brain at the Columbia University Medical
Center in New York, echoing many other experts. ‘I personally
think we’re going to get other therapies for Alzheimer’s a lot
sooner.’
“Stem cell
transplants show great potential for other diseases such as
Parkinson’s and diabetes, scientists said. Someday, embryo cell
studies may lead to insights into Alzheimer’s. If nothing else,
some said, stem cells bearing the genetic hallmarks of
Alzheimer’s may help scientists assess the potential usefulness
of new drugs.
“But given the lack
of any serious suggestion that stem cells themselves have
practical potential to treat Alzheimer’s, the Reagan-inspired
tidal wave of enthusiasm stands as an example of how easily a
modest line of scientific inquiry can grow in the public mind to
mythological proportions.
“It is a distortion
that some admit is not being aggressively corrected by
scientists.
“‘To start with,
people need a fairy tale,’ said Ronald D.G. McKay, a stem cell
researcher at the National Institute of Neurological Disorders
and Stroke. ‘Maybe that’s unfair, but they need a story line
that’s relatively simple to understand.’
“Human embryonic
stem cells have the capacity to morph into virtually any kind of
tissue, leading many scientists to believe they could serve as a
‘universal patch’ for injured organs. Some studies have
suggested, for example, that stem cells injected into an injured
heart can spur the development of healthy new heart muscle.
“Among the more
promising targets of such ‘cellular therapies’ are: Parkinson’s
disease, which affects a small and specialized population of
brain cells; type-1 diabetes, caused by the loss of discrete
insulin-producing cells in the pancreas; and spinal cord
injuries in which a few crucial nerve cells die, such as the
injury that paralyzed actor Christopher Reeve.…”
washingtonpost.com – June 10, 2004
Worth
considering....
The Birthmark
(1844), by Nathaniel Hawthorne
Michael Sandel has
called The Birthmark “a parable of the folly of
perfectionism.” This short story dramatizes a number of the
issues raised in Sandel’s essay on perfection, quoted above.
Aylmer, an accomplished young scientist, has married a perfectly
beautiful woman, Georgiana, whose one slight flaw is a small
hand-shaped birthmark on her left cheek. The following quote
describes the process by which the notice of this natural flaw
evolved into a passion for perfection which demanded the removal
of the birthmark—an uncertain task that would seek to correct
“what Nature left imperfect in her fairest work!”
“[H]e found this
one defect grow more and more intolerable with every moment of
their united lives. It was the fatal flaw of humanity which
Nature, in one shape or another, stamps ineffaceably on all her
productions, either to imply that they are temporary and finite,
or that their perfection must be wrought by toil and pain. The
crimson hand expressed the ineludible gripe in which mortality
clutches the highest and purest of earthly mould, degrading them
into kindred with the lowest, and even with the very brutes,
like whom their visible frames return to dust. In this manner,
selecting it as the symbol of his wife’s liability to sin,
sorrow, decay, and death, Aylmer’s sombre imagination was not
long in rendering the birthmark a frightful object….”
Reading The
Birthmark in conjunction with Michael Sandel’s “The Case
Against Perfection” is highly recommended. Since The
Birthmark was used as the basis for the initial discussions
of the President’s Council on Bioethics, it is available at
their website:
http://www.bioethics.gov/background/birthmark.html. To read
the transcript of the Council’s discussion of The Birthmark,
which includes comments by Michael Sandel, click on the link to
their January 2002 meeting at the beginning of The Birthmark.
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