Living in the Biotech Century -- January 25, 2005

When parents see children as projects to design rather than gifts to be received…

Human Growth Hormone and the Measure of Man

“In July 2003, the Food and Drug Administration (FDA) authorized pharmaceutical companies to promote human Growth Hormone (hGH) for use in children who are very short but not suffering from any specific illness or medical condition. Parents are now using hGH in record numbers, hoping that hormone treatment will give their kids happier childhoods and more prosperous adulthoods. No one should doubt these parental good intentions. But the normalization of height enhancement reflects a troubling disposition, familiar in our time, to redefine disadvantageous traits as ‘illnesses’ and look to medical techniques for a ‘cure.’ Of course, there are often real benefits to using medical technologies for self-improvement: straighter teeth, clearer complexions, firmer figures. But our technological enhancements to body and psyche may also undermine those human goods that are less obvious but more fundamental—especially parental love for the abnormal child and civic love for the abnormal neighbor. We can hardly expect the FDA as an institution to worry about such matters; its concern is the safety of products not the health of the culture. But when it approved height enhancement for healthy kids, the FDA made a mistake on our behalf. Exploring the nature of this error may help us deal more wisely with the biotechnical enhancements of the future, or at least see more clearly the full meaning of our ‘improvements’….”

Clinical trials for the brain-computer interface…

Patients Put on Thinking Caps

“Any geek worthy of the moniker has dreamed of connecting his or her brain directly to a computer for blissful freedom from keyboard and mouse. For quadriplegics, that ability would give life a whole new dimension.

“If people with physical handicaps could control a computer by just thinking, they could also operate light switches, television, even a robotic arm—something the 160,000 people in the United States who can’t move their arms and legs would surely welcome.

“Work in that brain-computer interface, or BCI, technology has ramped up considerably in the past five years. More than half of the scientific papers on the topic were published in just the past two years. Also, by connecting their patients’ brains directly to a computer, researchers have seen improvement in patients’ ability to control a cursor.

“Cyberkinetics is leading research on BCIs in the private sector. Last year the company enrolled its first patient, Matthew Nagle, in a clinical trial to test its BrainGate system. From his wheelchair, Nagle can now open e-mail, change TV channels, turn on lights, play video games like Tetris and even move a robotic hand, just by thinking….”

Editor’s Note: To watch a video of Matthew Nagle using Cyberkinetics’ BrainGate system, go to the article and click on the photo near the bottom of page 1.

Acorns and Embryos

“The prestigious New England Journal of Medicine (NEJM) recently invited two members of the President’s Council on Bioethics to reflect on the ethics of using embryonic stem cells in biomedical research. Paul McHugh, a professor of psychiatry at Johns Hopkins University, explained his opposition to the destruction of human embryos created by the union of gametes, but sought to distinguish such embryos from what he dubbed ‘clonotes’: that is, embryos brought into being by cloning (a process known technically as ‘somatic cell nuclear transfer’ or SCNT). He argued that human ‘clonotes’ are not really human embryos, and thus do not enjoy the high moral status of embryos brought into being by ordinary sexual intercourse or by the process of in vitro fertilization (IVF). These ‘clonotes,’ McHugh argued, may be legitimately destroyed for purposes of stem cell harvesting, so long as they are destroyed before the fourteenth day of their development. Michael Sandel, a professor of political theory at Harvard University, defended the killing of human embryos in biomedical research without regard to the method by which such embryos are brought into being. In his view, human embryos, whether produced by union of sperm and egg or by somatic cell nuclear transfer, are not entitled to the moral immunity against direct attack that is enjoyed by human beings at later developmental stages.

“Both McHugh and Sandel are leading figures in the embryo research debate, and the arguments they put forward are made frequently by others seeking moral grounds for engaging in the destruction of human embryos. But these arguments do not withstand critical examination. In our view, human beings in the embryonic stage are entitled to the same immunity from attack that is enjoyed by human beings at later developmental stages, and it is irrelevant whether these embryonic human beings came into existence by sexual union, in vitro fertilization, or somatic cell nuclear transfer….”

Robert P. George is the McCormick Professor of Jurisprudence at Princeton University and a member of the President’s Council on Bioethics. Patrick Lee is professor of philosophy at the Franciscan University of Steubenville.

Sorting through the dilemmas of organ donation…

Organ Donation Poses Painful Family Decision

“‘We got a telephone call from Mt. Sinai. It was about one o’clock in the morning ... and they said your son was in an automobile accident,’ Larry Fudacz recalls.

“Fudacz and his wife, Janet, were told their 21-year-old son Steve had sustained serious head injuries and that they would need to rush to the hospital. Steve eventually died of his injuries from the car accident.

“Shocked and grieving, the Hinsdale, Ill., couple were asked whether they would sign off on donating their son’s organs.

“‘We did not know if we were fulfilling Steve’s wishes or whether we weren’t,’ Larry Fudacz says.

“Illinois is one of just nine states where the decision to donate organs ultimately is left to surviving family members. But 20 percent of those families refuse, against the wishes of the deceased.

“Steve, who had signed up to be an organ donor, had not disclosed his decision to his parents before his tragic death. Advocates want to change the law in every state so the donor has the final say and family members are spared an extremely painful decision….”

Assessing the “tyranny of the possible”—the pressure to suppose that we are obligated to do whatever we are able to do…

Second Thoughts About Body Parts

“[W]e ought to be very skeptical about the increasing social pressure to encourage organ donation and transplantation. These are not just questions of public policy. They are also questions that pit our deep-seated hunger to live longer and our fear of death against equally deep-seated notions of the sacredness of human life in the body….

“In recent years we have also seen stories of children conceived in order to serve as bone marrow donors for family members. Increasingly, some argue that we should permit the sale and purchase of organs needed for transplant-that, in this way at least, the body may be a commodity for sale. Having set foot on the path of transplantation, we seem unable to find any exit ramp as we press toward a vision of humanity in which everyone becomes ‘a useful precadaver.’

“Can our public policy find an exit ramp? Not unless we first recover it for ourselves. The truth is, we will do almost anything to keep ourselves or our loved ones alive. Whatever we may think public policy ought to be, if our own life or our child’s were at stake, we might well bend our entire energies to the task of finding an organ for transplant. Whatever could be done we would be tempted to do, and we are therefore helpless in the face of the relentless advance of this technology. Christians, who know that death is indeed an evil and the last enemy opposed to God’s will for the creation, should find the temptation quite understandable.

“But we also need to develop the trust and the courage that will enable us sometimes to decline to do what medical technology makes possible. There are circumstances in which we can save life—even our own or that of a loved one—only by destroying the kind of world in which we all should want to live. In learning to say no, in becoming people who give thanks for medical progress but do not worship it or place our trust in it, we may bear a different kind of life-giving witness to our world.”

When medicine caters to consumer choice…

Fertility Clinic Ethics Raises Concerns

“They’ll check her ovaries and her bank account, but few U.S. fertility clinics have policies for determining a woman’s emotional or mental fitness to have a child, let alone whether it’s OK to help one who is past menopause, a new survey reveals.

“It shines a fresh spotlight on the ethics of the largely unregulated field of reproductive medicine, which reportedly has just helped a 66-year-old woman in Romania give birth.

“Answering hypothetical questions, most American clinics said they’d help a 43-year-old get pregnant. One in five would refuse single women, but 5 percent don’t even ask about marital status. One in four would help a woman who has the AIDS virus.

“‘A gay couple and a couple on welfare were about equally likely to be turned away,’ said Andrea Gurmankin, a Harvard School of Public Health psychologist who led the study when she previously worked at the University of Pennsylvania.

“Results were published Tuesday in Fertility and Sterility, a journal of the American Society for Reproductive Medicine.

“‘They were all over the place with respect to their views and values,’ said University of Pennsylvania bioethics chairman Arthur Caplan, who also worked on the survey.

“States need to set guidelines on some big issues, like helping women have babies after menopause, similar to agencies that limit adoptions to people under 55, he believes.

“Reproductive decisions now ‘are too driven by the desires of couples and not enough by the interests of children,’ Caplan said….”

Fatherhood by a New Formula

Using an Egg Donor And a Gestational Surrogate, Some Gay Men Are Becoming Dads—and Charting New Legal and Ethical Territory

New dads Michael Thorne-Begland (left) and Tracy Thorne-Begland hold their 4-month-old twins -- daughter Logan (left) and son Chance. The twins were carried to term by a surrogate in a pregnancy that was the product of sperm from one of the partners and eggs donated by the sister of the other.

“‘It’s a feeling the wealthy Washington entrepreneur likens to ‘stepping off into thin air,’ a gut-churning, middle-of-the-night realization that his life-changing choice is based on ‘some really big leaps of faith.’

“But most of the time, the single gay executive said, becoming a father using his sperm and eggs donated by a 24-year-old woman he met once in a downtown Starbucks to create embryos that were implanted in the uterus of a 22-year-old surrogate mother he barely knows, absolutely seems like the right thing to do.

“It was, he said, the culmination of increasingly urgent soul-searching that accelerated as he hurtled toward 50.

“‘I’ve always loved children and I thought, “What am I waiting for?” I want somebody to love me and I want somebody to love,’ said Scott, who agreed to be interviewed on the condition that his last name not be published because he was concerned about the reaction of some business associates.

“After the demise of a long-term relationship, Scott decided that he had the means and the motivation to become a single father. He rejected adoption because he wanted his own biological child. Instead Scott embarked on a two-year process, fraught with uncertainty, that will cost him $100,000 by the time he takes the baby, due in late June, home from the hospital….”

Taking a closer look at the “ups” and “downs” of assisted reproduction…

An Inconceivable Dilemma

“Samantha Bennett and Max Brody, partners for five years, badly want a baby. Samantha, 35, stopped taking the contraceptive pill, which she had been using for more than a decade, 18 months ago. In April last year, frustration at not falling pregnant turned to a real fear that she may never conceive and that she was running out of time. So the couple turned to medical science and in vitro fertilisation.

“‘No one tells you how intrusive it is,’ says Samantha. ‘No one mentions feeling bloated, nauseated, emotional and scared. No one mentions the humiliation of feeling completely inadequate. Goodbye alpha male. But it will all be worth it when we have a child.’

Donna Lankshear, 33, well knows the feeling. Her three-year-old twins, Erin and Amy, more than compensate for the mental anguish she endured while undergoing IVF. ‘Physically it was pretty horrible, but psychologically it was a real struggle,’ she admits. ‘And then there was an emergency caesarean section because one of the girls was in distress. But our lives will never be the same again; it is wonderful!’

“About 45,000 ART (assisted reproductive therapy) babies have been born in Australia since the first IVF birth here (Candice Reed was born in Melbourne on June 23, 1980). ART is now responsible for about 3 per cent of births and is growing at 8 per cent a year. In the financial year 2003-04, Medicare paid out rebates to almost 20,000 women who’d undergone ART. Two reasons for the dramatic increase are advances in science and IVF success rates.

“Back when Reed was born, the average chance of a live birth using IVF was about 2 per cent. In 2005 this has risen to about 25 per cent. According to the Infertility Treatment Authority, the statutory body that oversees infertility research and services in Victoria, of all births in Australia in 2003 about 6700 or 3 per cent resulted from these procedures, almost doubling the number of five years ago.

“In Australia there are about 52 centres that offer assisted reproduction technology. Sydney IVF and IVF Australia in Sydney have the best success rates, employing high-profile doctors and cutting-edge technology and science.

“While this provides hope to many women unable to conceive, IVF has its critics. Recent studies have shown that genetic problems may be more common in IVF children. If, for example, a woman cannot conceive because she has a genetic disorder and becomes pregnant with the help of an IVF procedure, she could pass that genetic disorder on to the child….”

From “Separating Sex and Reproduction: The Ambiguous Triumphs of Technology”

“The coming of a new millennium has presented us with an important opportunity to reflect on the fundamental significance of technology for human values. There are other ways of construing the central question in contemporary debate within our culture, although any analysis that does not contend with underlying assumptions about human nature is seriously deficient. Indeed, it could be argued that part of our present cultural malaise lies precisely in our capacity to address questions of cultural shift merely ad extra, as if the settled character of human being—what it means to be a member of Homo sapiens—were beyond dispute. Yet the depth of our problem is indexed precisely in the degree to which changes in our cultural environment (public policy, the professions, science and technology) reflect and in turn affect our conception of who we are.

“A cultural revolution could indeed be defined in such terms: as that period during which the connection between what people believe themselves to be, and the cultural institutions and precepts around them, is particularly fluid, as traffic passes both ways. On such a scale of measurement, this breakpoint generation’s experience must rank at the top. If we share the illusion that the changes around us are merely around us, we participate most thoroughly in the contemporary myth that it does not matter who we think ourselves to be. If we break with that illusion, and see at the center of all the cultural transitions around us the question of human being, we gain the measure of the challenge which we confront. And this is nowhere more true than in the arena of science and technology, in its application to medicine and the new powers we have to determine ourselves.

“In other words, the threat to human dignity posed by the technological reduction of human nature and its possibilities lies close to the heart of the malaise in contemporary culture….”

Nigel Cameron’s essay, “Separating Sex and Reproduction,” is included in The Reproduction Revolution: A Christian Appraisal of Sexuality, Reproductive Technologies, and the Family, edited by John F. Kilner, Paige C. Cunningham, and W. David Hager (Wm. B. Eerdmans-Lightning Source, 2000).

Living in the Biotech Century is produced, twice monthly, by The Humanitas Project. Please note that after a period of time, some web pages may no longer be available due to expiration or a change of address. Other pages may still be available, but only for a fee.

The views expressed in these resources are not necessarily those of The Humanitas Project. Our goal is to provide access to information from various sides of the debate. Ethically and morally, The Humanitas Project unapologetically defends both human dignity and the sanctity of human life in all contexts, from the vantage point of historic Christianity.

Feel free to forward this e-mail to anyone who might be interested in these issues. To subscribe or unsubscribe to Living in the Biotech Century, visit our website at www.humanitas.org, or e-mail . The Humanitas Project is a 501(c)3 nonprofit organization, and all gifts are tax deductible. For more information on The Humanitas Project, contact Michael Poore, Executive Director, at 931-528-2408 or .

Redesigning junior…customizing our kids…

Short Kids Reach New Heights with Costly Drug

Soaring demand worries critics

“In kindergarten, Lexi Muehlbauer wore size 3 toddler clothes. When she started junior high, she could walk underneath the volleyball net without ducking.

“‘I really get sick of people calling me “shorty” every day,’ the 12-year-old Joliet girl said. ‘It’s not like I’m going to go up to a kid and say, “You’re ugly”...or, “You’re fat.” But they do that to me with “shorty” every day.’

“For years, shortness was considered simply a genetic fact of life, not a medical issue. But a little more than a year after the Food and Drug Administration loosened the standards for use of an expensive growth hormone, Lexi and thousands of other children are using it to become taller.

“FDA approval of Eli Lilly’s Humatrope for short but otherwise healthy children has reignited a debate in the medical arena, with some insisting expanded treatments are medically necessary and others labeling the practice ‘cosmetic endocrinology’….

“‘It’s on the agenda of every parent with a short child today,’ said Dr. Robert Rosenfield, a pediatric endocrinologist at the University of Chicago. He said one parent stormed out of his office vowing to find the drug elsewhere after Rosenfield refused to prescribe it for his son.

Chicago Tribune – January 9, 2005