The Humanitas Project


Living in the Biotech Century

News, Resources, and Commentary

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.” – 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….” – 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….” – 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/ – 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.…” – 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:  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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