Living in the Biotech Century -- September 13, 2006

“If you have the potential to develop cancer, you can’t be in our family...”

Chloe Kingsbury was conceived through elective in vitro fertilization. (Sally Ryan for The New York Times)

“As Chad Kingsbury watches his daughter playing in the sandbox behind their suburban Chicago house, the thought that has flashed through his mind a million times in her two years of life comes again: Chloe will never be sick.

“Not, at least, with the inherited form of colon cancer that has devastated his family, killing his mother, her father and her two brothers, and that he too may face because of a genetic mutation that makes him unusually susceptible.

“By subjecting Chloe to a genetic test when she was an eight-cell embryo in a petri dish, Mr. Kingsbury and his wife, Colby, were able to determine that she did not harbor the defective gene. That was the reason they selected her, from among the other embryos they had conceived through elective in vitro fertilization, to implant in her mother’s uterus.

“Prospective parents have been using the procedure, known as preimplantation genetic diagnosis, or P.G.D., for more than a decade to screen for genes certain to cause childhood diseases that are severe and largely untreatable.

“Now a growing number of couples like the Kingsburys are crossing a new threshold for parental intervention in the genetic makeup of their offspring: They are using P.G.D. to detect a predisposition to cancers that may or may not develop later in life, and are often treatable if they do....”

Manufacturing babies isn’t just about health...it’s also about intelligence, appearance, athletic ability, the sex of the baby, etc....

“The well-educated are significantly more open to the idea of ‘designing’ babies than the poorly educated, according to a new study by psychologists at the University of East Anglia.

“The findings will be presented by Dr. Simon Hampton at the BA Festival of Science on Setpember 5.

“Dr. Hampton and his team at UEA’s School of Social Work and Psychosocial Studies examined what different groups of people in the UK would ‘design into’ their children given the opportunity.

“The evidence suggests that there are gender, age and socio-economic class differences in what is deemed desirable and that many prospective parents would be prepared to manipulate their babies in ways that are at odds with moral orthodoxy.

“‘People assume that the very notion of designer babies stems from the desire of prospective parents for their children to be healthy,’ said Dr. Hampton.

“‘However, the picture is complicated by the shifting meaning of “healthy” and confusion about when the manipulation of children’s physical, psychological or social characteristics is legitimate, natural or ethical....’”

“NHS patients have been implanted with potentially contaminated pieces of bone from a batch stolen from dead Americans, including the veteran broadcaster Alistair Cooke.

“More than 70 pieces of bone were grafted into the patients at about 20 hospitals after they were imported from a New Jersey company now under investigation in America.

“The imported bones were harvested by the firm from corpses in US funeral parlours without the deceased’s prior consent and without adequate checks to ensure the bodies were free of disease.

“While many of the affected bone products that entered Britain were recalled after a safety alert, it was too late to retrieve 77 implants that were already grafted on to the hips and jaws of British patients....”

“The American Bar Association’s (ABA) Special Committee on Bioethics has a new head who is pro-abortion and pro-euthanasia.

“Chairwoman Estelle Rogers is the former executive director of the Death with Dignity National Center, a Washington-based organization dedicated to advancing assisted suicide.

“Teresa Collett, a professor at the University of St. Thomas School of Law in Minnesota, told CitizenLink that Rogers has also been an ardent pro-abortion activist—having held positions at the Planned Parenthood Federation of America, the Pro-Choice Public Education Project and the American Civil Liberties Union Reproductive Freedom Project.

“She has a definite perspective that is contrary to the culture of life,’ Collett said. ‘I would suggest she can’t help but bring that viewpoint to the chairmanship....’”

Learning some of what we don’t know about patients in a “vegetative state”...

Brain Images of Woman in Vegetative State Hint at Awareness

“Sophisticated brain-imaging techniques suggest that a young woman in a vegetative state five months after a traffic accident had some mental functioning, even though she was unable to physically respond to her environment, British researchers report today.

“The woman’s brain showed mental activity virtually identical to that of healthy people when she was addressed in complex sentences and when told to imagine activities such as playing tennis, the physicians reported in the journal Science.

“The findings challenge the standard diagnosis of a vegetative state, implying that some patients may have what Dr. Lionel Naccache of the French National Institute of Health and Medical Research called ‘a rich mental life’ in an accompanying editorial.

“‘I was absolutely stunned’ by the results, said Dr. Adrian M. Owen of the Medical Research Council Cognition and Brain Sciences Unit in Cambridge, who led the study. ‘This showed that she is aware.’

“That conclusion will inevitably bring new hope to people with loved ones in comas or vegetative states, along with demands for further testing—a difficult proposition because most hospitals do not possess the expensive equipment required.

“And Dr. Joseph J. Fins of Cornell University’s Weill Medical College in New York cautioned that because so little is known now, such brain scans might raise more questions than answers....”

A look at the politics of doing research on patients in a “vegetative state”...

A small but passionate group of doctors say that electricity applied deep in the brain can jolt patients out of irreversible comas. That’s when the real problems begin.

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Edwin Cooper's controversial technique may have pulled Candice Ivey out of her coma

“For someone left for dead 12 years ago, Candice Ivey seems to be doing pretty well. She’s still got her homecoming queen looks and A-student smarts. She has earned a college degree and holds a job as a recreational therapist in a retirement community. She has, however, lost her ballerina grace and now walks a bit like her feet are asleep. She slurs her words a little, too, which sometimes leads to trouble. ‘One time I got pulled over,’ she says in her North Carolina twang. ‘The cop looked at me and said, “What have you been drinking?” I said, “Nothing.” He said, “Get out here and walk the line.” I was staggering all over the place. He said, “All right, blow into this.” Of course I blew a zero, and he had to let me go.’

“In November 1994, when Ivey was 17, a log truck T-boned her Chevy Blazer. She remembers nothing of the next two months. But it’s all seared into the memory of her mother, Elaine, especially the part where the doctors told her that Candice, who was in a coma and breathing by respirator, should be pronounced dead. Her brain, they said, was entirely and irreversibly destroyed by a week of swelling and bleeding and being pushed up against the inside of her skull like a ship scuttled on a reef....”

A procedure that can’t be perfected in humans without experiments that will put non-consenting human subjects—babies—at risk...

Womb Transplants Could be Two Years Away, Experts Claim

“Womb transplants may be possible within two years, giving hope to women unable to have children, doctors claimed yesterday.

“London-based researchers, working with medical teams in New York and Budapest, have developed a technique for providing a transplanted womb with a reliable blood supply. Women born without a uterus or who have undergone an emergency hysterectomy would be among those to benefit from the procedure.

“The transplant would be temporary, doctors being reluctant to continue giving a patient drugs to help the body to fight rejection of the womb. That could leave the woman two to three years to conceive and carry a baby or babies before the womb was removed.

“Maintaining a reliable blood supply has been seen as crucial before the technique—which has worked in animals—can be successfully performed on humans. The first uterus transplant, carried out on a Saudi woman in 2000, failed when a blood vessel supplying the organ developed a clot....”

“A medical journal in March published a study suggesting that drinking coffee can raise the risk of heart attack, but only for people with a gene that makes them slow metabolizers of caffeine. Experts called the finding intriguing, but said it needed to be validated by others and its health implications better understood.

“Still, Consumer Genetics, a company formed only a month earlier, is already advertising a genetic test that purports to tell consumers whether they can continue to enjoy their morning jolt.

“That is how fast things can move in the rapidly expanding, chaotic and largely unregulated world of direct-to-consumer genetic testing, an industry at the confluence of two of the greatest of recent technological achievements—the Human Genome Project and the Internet.

“With a few mouse clicks, consumers can order tests that promise to tell them if they are at risk for particular diseases, to trace their ancestry back to the time of Genghis Khan, to help choose which antidepressant would be best for them, to identify the sex of their fetus as few as five weeks into pregnancy and to give advice on diet or exercise....”

‘Eugenic Abortion’ Among Ethical Issues Raised About Prenatal Gene Testing

“Prenatal testing for gene-transmitted diseases raises problems of ‘toxic knowledge,’ ‘micro-eugenics’ and ‘eugenic abortion,’ said several members of the President’s Council on Bioethics.

“Another issue raised is whether prenatal gene testing violates the rights of an unborn person who, by such testing, is deprived of the right to make the decision for himself or herself once old enough to understand what is at stake, they said.

“The members were commenting on some of the ethical issues raised by gene testing, especially when it involves diagnosing an illness that normally does not occur until late in a person’s life....”

Image: Ritalin

Some parents eager to boost their kids' academic performance see hope in a bottle. (Joe Raedle / Getty Images)

“A 15-year-old girl and her parents recently came in for a chat with Dr. James Perrin, a Boston pediatrician, because they were concerned about the girl’s grades. Previously an A student, she was slipping to B’s, and the family was convinced attention deficit hyperactivity disorder was at fault—and that a prescription for Ritalin would boost her brainpower.

“After examining the girl, Perrin determined she didn’t have ADHD. The parents, who had come in demanding a prescription, left empty-handed.

“Perrin, a professor of pediatrics at Harvard Medical School and spokesperson for the American Academy of Pediatrics, and other physicians say this is an increasingly common scenario in doctors’ offices around the country, though there are no hard statistics on it.

“Parents want their kids to excel in school, and they’ve heard about the illegal use of stimulants such as Ritalin and Adderall for ‘academic doping.’ Hoping to obtain the drugs legally, they pressure pediatricians for them. Some even request the drugs after openly admitting they don’t believe their child has ADHD....”

“In the debate about the moral standing of human embryos, some defenders of embryo-destructive research have claimed that human embryos are not human beings until implantation (i.e., when the embryo attaches to the uterus, approximately six days after fertilization), and others have claimed that they are not human beings until gastrulation (i.e., when the possibility of twinning no longer exists and the primitive neural streak first appears, approximately 14 days after fertilization). These claims have been repeated by policymakers, scientists, and bioethicists alike, yet they fly in the face of the embryological evidence. Seeing why will put the embryo research debate on a more solid biological footing....

“Science has not solved every mystery of early human development. But human embryology has advanced sufficiently to enable us to dismiss certain fallacies about when a new human life comes to be. We do not doubt the good faith of those who believe that individual life begins at implantation or after the powers of twinning and fusion have passed. But arguments advanced to support these beliefs collapse under scrutiny. We must not let the desire to use human embryos in research obscure our grasp of what those embryos truly are from day 1: namely, nascent members of the human species, worthy of that fundamental respect and protection that justice demands for every member of the human family.”

“The First Fourteen Days of Human Life” was published in the Summer 2006 issue of The New Atlantis. The complete essay is available online. Patrick Lee is professor of bioethics at the Franciscan University of Steubenville in Ohio. Robert P. George is the McCormick Professor of Jurisprudence at Princeton University and a member of the President’s Council on Bioethics.

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