The Humanitas Project
A CENTER FOR BIOETHICS EDUCATION
Living in the Biotech Century
News, Resources, and Commentary
June 10, 2005
Understanding how genetic screening can be used for eugenic purposes...
Would You Have Allowed Bill Gates to be Born?
by Arthur Caplan
Advances in prenatal genetic testing pose tough questions
“Who needs Bill Gates? No, I don’t mean who needs a gazillionaire corporate titan, a man whose company, Microsoft, took in billions of dollars last year by controlling nearly all the software used to run nearly every computer on the planet.
“No, I mean, literally, who needs him? If you could go back in time and stop the birth of the world’s most famous nerd, would you?
“...[I]f I told you it’s possible that Gates has a medical condition that accounts, in part, for both his tremendous achievements and for his ‘nerdiness?’ Gates is widely reported to display many personality traits characteristic of a condition known as Asperger’s syndrome. Asperger’s is a mild version of autism, a more serious condition that renders many children unable to talk, be touched, communicate or socialize. While I certainly do not know if Gates has Asperger’s, his difficulties in social settings are nearly as legendary as his genius, so it’s possible.
The perils of genetic testing
“That said, if you had been Gates’ potential mom or dad 50 years ago, what would you have done if you knew about his abilities and flaws before he was born? Would you have wanted a child that would go on to do great things but would have a hyper-nerdy personality? What if the decision about whether to have a child like him also carried a risk that he might be born with far more serious disabilities? Would you have decided to carry the baby to term...?”
Editor’s Note: In this article, Arthur Caplan makes a case against using genetic diagnosis to eliminate embryos that would develop various forms of autism later in life. However, he is not consistent in his opposition to using genetic testing for eugenic goals. Along with co-authors Glenn McGee and David Magnus, he argued in an article in the British Journal of Medicine, as he has elsewhere, that “An individual couple may wish to have a baby who has no risk of inheriting Tay-Sachs disease or transmitting sickle cell disease. Or they may want a child with a particular hair color or of a particular sex.... No moral principle seems to provide sufficient reason to condemn individual eugenic goals.” For an extended discussion of the use of genetic testing for eugenic purposes, please see Christine Rosen’s outstanding essay, “Eugenics—Sacred and Profane,” which appeared in The New Atlantis (Summer 2003).
Genetic screening...making a baby that will loose its mommy...
A Cruel Choice
by Jennifer Foote Sweeney
A woman decides to have a child knowing that she’s about to descend into dementia. That’s morally indefensible.
“Children are victimized all over the planet in myriad ways. In the chaos of war, famine and forced migration, they are killed, starved, neglected or sexually exploited. Just yesterday, in a report released by the United Nations, it was revealed that officials in West African refugee camps routinely demand sex from children in exchange for the food and medicine they need to survive.
“On another page of the same newspaper, there was a story about a 30-year-old woman, destined by genetic inheritance to suffer from early-onset Alzheimer’s disease, who gave birth to a baby girl who was screened as an embryo to make sure she did not carry the same rare gene. This was meant to be a triumphant announcement, a new feat of reproductive technology reported with pride by the woman’s doctors in the Journal of American Medical Association (JAMA). But in many ways, it is one more story about the victimization of children, another report of the powerful deriving satisfaction from the powerless in a self-serving act of cruelty.
“By the grace of medical wizardry, this woman can be certain that her child will be spared a fate that already has ravaged her family, hitting her sister, brother and father, who died at 42. She took the commendable step of protecting her baby from physical illness. But when her daughter’s embryo was implanted in her womb, she also knew that within a few years, it is very likely that she will no longer be able to care for her child, or even recognize her.
“Here, then, is not just a helpful means of ensuring the health of a child before birth, but a new and novel form of exploitation, in which the exploiter literally creates the subject of her exploitation. Here, too, is a painful illustration of how reproductive rights, a crucial and always fragile aspect of our democracy, will inevitably involve incidents of brutality, particularly when it comes to citizens without a vote, or, in many cases, the ability to speak....”
Editor’s Note: The mother in this story did not take a “commendable step” when she chose to select for implantation only embryos that would not get early-onset Alzheimer’s. She simply ensured that those of her children who would be born would not have the potential to get this dreaded disease. Those embryos that could develop early-onset Alzheimer’s were not implanted because their lives were judged to be “lives not worth living.” This sort of decision-making has been referred to as the “new eugenics,” where parents use genetic endowment as the criteria to determine which of their children will be born.
There is no such thing as a spare embryo...
President Discusses Embryo Adoption and Ethical Stem Cell Research
White House Press Release
“THE PRESIDENT: Thank you all. Please be seated. Good afternoon, and welcome to the White House. I have just met with 21 remarkable families. Each of them has answered the call to ensure that our society’s most vulnerable members are protected and defended at every stage of life.
“The families here today have either adopted or given up for adoption frozen embryos that remained after fertility treatments. Rather than discard these embryos created during in vitro fertilization, or turn them over for research that destroys them, these families have chosen a life-affirming alternative. Twenty-one children here today found a chance for life with loving parents.
“I believe America must pursue the tremendous possibilities of science, and I believe we can do so while still fostering and encouraging respect for human life in all its stages. In the complex debate over embryonic stem cell research, we must remember that real human lives are involved—both the lives of those with diseases that might find cures from this research, and the lives of the embryos that will be destroyed in the process. The children here today are reminders that every human life is a precious gift of matchless value....”
Assessing the unintended consequences of technology...
WARNING: Side Effects can be Severe
by Susanne Quick
Common drugs are seeping into our lakes, fish and water supply
“It was barely a drop, but the effect of the drug was astonishing.
“Pointing to a digital recording of fathead minnows gasping for breath in a milky, murky stew, researcher Rebecca Klaper said: ‘We had planned to keep them in there for a week, but we had to pull them the next day. They were going to die.’
“Klaper, of the University of Wisconsin-Milwaukee’s Great Lakes WATER Institute, is investigating the effects of common drugs, such as pain relievers, anti-depressants and lipid regulators, on lake fish and invertebrates. Many of these medications pass through the body, into the sewer system and out to the environment largely unaltered. And because they are designed to affect the biology of a living organism—to reduce headaches, control seizures or suppress coughs—she and other researchers think they could have an impact on fish and other wildlife....
“It is estimated that more than 1,000 tons of active pharmaceutical products are manufactured each year. Pharmaceutical sales are increasing 7% to 8% annually, and nearly 45% of all sales in 2004 were in North America. The U.S. Food and Drug Administration requires environmental impact statements under some circumstances, but the circumstances are so unusual that pharmaceutical companies essentially don’t have to worry about them.
‘Like canaries in a mine shaft’
“Researchers say two primary, and related, concerns exist when it comes to these drugs. First, the drugs going into the water might affect the environment, particularly the biological food chain. Second, the drugs could come back to people in drinking water....”
Milwaukee Journal Sentinel – May 28, 2005 (Free Registration Required)
Of course, we must try to save the child, because saving children is what medicine is meant to do...
A Mother’s Last Act Of Love To Save Her Unborn Child
by Justin Torres
“There’s a truism in conservative politics that abortion is everything. Clinton’s impeachment was a proxy fight over abortion (the feminists were trying to save the bacon of the most reliably pro-abortion administration in history, thus demonstrating that they cared more for the ghastly procedure than the oppressed sisterhood). Certainly, the fight over the ‘nuclear option’ was all about abortion and the Supreme Court.
“Even some members of the left have begun to question the Democratic party’s rigid adherence to the turgid politics of Roe v. Wade, and the way that adherence has distorted Democratic positions on everything from schools to labor to international aid. (For an example, see Benjamin Wittes’s penetrating ‘Letting go of Roe,’ in the February 2005 Atlantic Monthly.)
“An evil like abortion, though, is apt to distort more than simply our politics. My family has been given a tragic lesson in this truth recently.
“As some readers may know, on May 6, my sister-in-law Susan Torres—26 years old, a mother of a 2-year-old boy, and 17 weeks pregnant—suffered a stroke brought on by undiagnosed melanoma. At this time, she lies brain dead in a Northern Virginia hospital, with no hope of ever recovering, her breathing sustained by machine.
“In this midst of this tragedy and the grief that lingers like a context, like a fog, over every conversation and meal and moment in the hospital, we have hope. Doctors believe that they may be able to save this baby, keeping Susan alive long enough to deliver the child prematurely. It is no more than a fighting chance, far less than a certainty, that the baby will live. But we have hope. Keeping this baby alive is Susan’s last act of love, one that has been tremendously moving to watch even as it makes you question everything you thought you knew about the fundamental justice of the world....”
Justin Torres is a research fellow at the Hoover Institution at Stanford University and research director of the Thomas B. Fordham Foundation.
Studying the brain in silico rather than in the laboratory...
IBM to Build First Computer Model of Brain
Company will team up with Swiss researchers to create prototype
“International Business Machines Corp is linking with a team of Swiss scientists to create the world’s first accurate, computer-based model of the brain, the U.S. company said on Monday
“The researchers hope that modeling the brain at the cellular level will give new insights into the workings of the most complex organ in the body.
“The immediate goal is to model the circuitry in the neocortex, which accounts for about 85 percent of the human brain’s mass and is thought to be responsible for language, learning, memory and complex thought.
“By expanding the work to other areas, scientists hope to eventually generate a computer-based model of the entire brain.
“Henry Markram and colleagues at Ecole Polytechnique Federale de Lausanne, Switzerland, will spend the next two years using IBM’s supercomputer Blue Gene to create a working 3-dimensional model of the neocortex....”
But the ethical issues are radically different from the issues raised by the donation of other organs...
Woman Gives Birth After Ovary Transplant
“An Alabama woman gave birth this week to a baby girl after undergoing the first known successful ovary transplant in the United States.
“Stephanie Yarber, 25, gave birth Monday night to a 7 pound, 15 ounce girl named Anna, said her sister, Melanie Morgan. It was the sister who donated the ovarian tissue that made Yarber fertile.
“‘It’s a wonderful thing,’ Morgan said Tuesday, characterizing the successful procedure as a ‘partnership with God, my sister and me.’
“Dr. Sherman Silber, an infertility specialist in St. Louis, performed the transplant in April 2004, and Yarber became pregnant only five months later.
“Yarber became menopausal at age 14 and was unable to become pregnant without medical help. She had tried in vitro fertilization twice, using eggs donated by her sister, but nothing worked until the ovary transplant....”
Returning life’s final act to its historical position as a natural, profound and private event...
A Movement to Bring Grief Back Home
Many Bereaved Opting to Bypass Funeral Industry
“After Richard Saul died of Lou Gehrig’s disease just before Christmas last year at age 77, neighbors and friends gathered at his Cleveland Park home to extend sympathies to his widow, Judy, and their sons and grandson. Many were surprised to learn that they could also pay their respects to Richard.
“His body, washed and dressed in his favorite clothes, lay in the master bedroom, cooled by dry ice and open windows, and surrounded by fresh flowers, burning candles, family photographs and mementos of his many years as a lawyer, civil servant and father of four. Like a small number of other bereaved in the Washington area and nationally, Judy Saul chose to care for her husband’s body for several days at home.
“Once the hospice nurse who came to certify the death had convinced the D.C. coroner’s office that keeping the deceased at home was legal—as it is in the District and all but five states (Connecticut, Delaware, Indiana, Nebraska and New York)—Saul and a friend, Sally Craig, had prepared her husband’s body with the assistance of Beth Knox, a ‘funeral rites’ educator whom Saul had met two months before....”
Using genetics to determine drug dosage...
A Step Closer to Personalized Medication
“Researchers last week announced that they had successfully used patients’ genes to determine how much of a potentially dangerous blood-thinning medication they should get—bringing the era of personalized medicine a giant step closer.
“Personalized medicine, where patients get a diagnosis and treatment plan tailored to their genetic profile, has been a promise since the human genome was first sequenced five years ago. Doctors hope that one day patients’ entire genetic profile will be placed on a single chip, and medications will be tailored based on that data for the rest of their lives.
“Over the last few years, two cancer drugs—first Gleevec and then Iressa—have been shown to work better for people with certain genetic profiles. But last week’s report, published in the New England Journal of Medicine, marks the first time the approach has worked for determining drug dosage.
“‘To me, it’s really remarkable that five years after the sequencing of the human genome we’re starting to see direct applications for clinical medicine,’ said Dr. Scott Weiss of Brigham and Women’s Hospital who conducts research into personalized asthma treatments. ‘The major areas are going to be in prediction—of who gets disease, and for those who have it, predicting the course of their disease, and predicting who’s going to respond to medication....’”
From The Abolition of Man
by C. S. Lewis
“I have described as a ‘magician’s bargain’ that process whereby man surrenders object after object, and finally himself, to Nature in return for power. And I meant what I said. The fact that the scientist has succeeded where the magician failed has put such a wide contrast between them in popular thought that the real story of the birth of Science is misunderstood. You will even find people who write about the sixteenth century as if Magic were a medieval survival and Science the new thing that came in to sweep it away. Those who have studied the period know better. There was very little magic in the Middle Ages: the sixteenth and seventeenth centuries are the high noon of magic. The serious magical endeavour and the serious scientific endeavour are twins: one was sickly and died, the other strong and throve. But they were twins. They were born of the same impulse. I allow that some (certainly not all) of the early scientists were actuated by a pure love of knowledge. But if we consider the temper of that age as a whole we can discern the impulse of which I speak.
“There is something which unites magic and applied science while separating both from the wisdom of earlier ages. For the wise men of old the cardinal problem had been how to conform the soul to reality, and the solution had been knowledge, self-discipline, and virtue. For magic and applied science alike the problem is how to subdue reality to the wishes of men: the solution is a technique; and both, in the practice of this technique, are ready to do things hitherto regarded as disgusting and impious—such as digging up and mutilating the dead....”
The Abolition of Man (all three essays, including notes) is available online at the website of The Augustine Club, “a student organization dedicated to the study of the Christian intellectual tradition and its approach to the modern world.” However, if you would prefer reading the book, it is available at The Humanitas Project’s website.
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