The Humanitas Project

A CENTER FOR BIOETHICS EDUCATION

Living in the Biotech Century

News, Resources, and Commentary

December 4, 2006

“When they discovered on the scan that Down’s syndrome was a possibility, they very kindly offered to kill him for us.”

I’m Not a Saint, Just a Parent

The Times chief sports writer Simon Barnes describes life with his five-year-old son Eddie, who has Down’s syndrome

“The thought hit me with such extraordinary power that my legs almost gave way beneath me. I walked a few steps to one of the benches that surround the duck pond on the edge of Barnet, and sat down. My heart was racing, my breathing shallow, I was covered in a sweat, and I thought for a moment that I might pass out or throw up. After a decent while I decided I would do neither. And I got up and went to the supermarket, for my wife was in hospital and was filled with a passion for fresh fruit.

“What if he has Down’s syndrome? That was the sudden question that had overwhelmed me. My first child was to be born any day and there were complications, which was why my wife was in hospital. So naturally I was full of nerves, as a first-time parent must be. The duck-pond incident was an attack of the horrors: I imagined a situation so terrible that it almost robbed me of consciousness. Down’s syndrome! The horror, the horror!

“Well, he didn’t. Joseph was born the next day by Caesarean section, and has no problems beyond his own singularity of nature. Joe is great: Cindy and I were, if you’ll forgive the word, blessed, and life carried on in a new and extraordinary way. So far, so ordinary.

“Seven years later we had another child. He does have Down’s syndrome....”

The Times – November 13, 2006

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“My doctor doesn’t believe me....”

Cancer Chemotherapy is Shown to Impair the Brain

Findings that it can kill cells and cause areas to shrink lend support to patients’ reports of feeling mental effects.

“Cancer chemotherapy can impair the brain, killing crucial neural cells and causing key parts of the organ to shrink, according to two studies released this week.

“The new findings add to a growing body of evidence suggesting that ‘chemo brain’—the mental fuzziness, memory loss and cognitive impairment often reported by cancer patients but often dismissed by oncologists—is a serious problem.

“‘Those of us on the front lines have known this for a long time, but now we have some neuropathological evidence that what we are seeing involves an anatomic change,’ said Dr. Stewart Fleishman, director of cancer supportive services at Beth Israel Medical Center and St. Luke’s-Roosevelt Hospital Center in New York.

“He said the most common question he encountered from patients during his public lectures was: ‘My doctor doesn’t believe me. How can I convince him this is real?’

“The new studies should help convince physicians who are skeptical about the issue, said Fleishman, who was not involved in the research....”

Los Angeles Times – December 1, 2006

We’re more complicated than we thought...research that may change forever the field of human genetics...

New Human Gene Map Shows Unexpected Differences

“One person’s DNA code can be as much as 10 percent different from another’s, researchers said on Wednesday in a finding that questions the idea that everyone on Earth is 99.9 percent identical genetically.

“They said their new version of the human genetic map, or ‘book of life,’ fills in many missing pages and chapters to explain how genes are involved in common diseases.

“‘This important work will help identify genetic causes of many diseases,’ Dr. Mark Walport, director of Britain’s Wellcome Trust, said in a statement.

“Instead of showing single variations in human DNA that make people unique, the map looks at differences in duplications and deletions of large DNA segments known as copy number variants or CNVs, which can help explain why some people are susceptible to illnesses such as AIDS and others are not....”

YAHOO! NEWS/Reuters – November 22, 2006

A party of death, or a party of mastery?

Beyond the Right to Life

by Wilfred M. McClay

A Review of The Party of Death, by Ramesh Ponnuru

“[T]he problem with the term ‘party of death’ is not just a matter of misguided tactics, but also one of mistaken strategy. The term is simply not very accurate or helpful in identifying the phenomenon to which it is applied....

“Indeed, I believe the term misleads us, by dividing the world up in the wrong way. The party in question is not in love with, or advocating for, death. It is in love with, and advocating, a short-sighted and impoverished vision of life: the dream of complete and unconstrained personal mastery, of the indomitable human will exercised on the inert and malleable stuff of nature by the heroically autonomous and unconditioned individual, who is ever the master of his fate and captain of his soul, and whose own existence is, or deserves to be, infinitely extendible. It eagerly embraces the Jeffersonian dictum that the earth belongs to the living, and rejects the Burkean idea that society is an eternal contract between the living, the dead, and the unborn—a contract that is most powerfully manifested in the primal strength of family bonds, and that serves as a profound form of prior restraint upon the individual’s room to maneuver. Such constraints are rightly cast off, it is thought, as the dead weight of memory.

“Such a view may seem coolly rational and unsentimental, the very picture of enlightened and progressive science. But its instrumental rationality actually operates in service to the most gaudily romantic ideas of selfhood. It regards the abstraction of the liberated individual, of Homo invictus, as the benchmark reality, the only true source of moral standing. By grounding moral judgment in the self’s ability to stand alone and radically independent, it must seek to deny history, and even deny time itself, instead seeking to freeze the present and then utopianize it, freezing in place the youth and beauty and strength that are one’s own, or that one can acquire for oneself, whatever the cost to the future (or to the past). But independence is all-important in this picture of reality. For the minute one’s ability to be independent falters and fails...well, then the game is up, and all entitlements are rendered null and void.

“Abortion, euthanasia, assisted suicide, the cannibalization of embryos—all these things are linked, but they do not reflect a desire to promote death per se. Instead, they reflect a world in which the overwhelming desire of the sovereign individual will to have its way, and to order and manufacture a world that it can live in without let or hindrance, is regarded as the chief source of value, or at any rate the value that trumps all others. They reflect a view of life that trivializes death, precisely because it fails to understand what life is....”

Wilfred M. McClay, a senior fellow at the Ethics and Public Policy Center, is SunTrust Chair of Humanities at the University of Tennessee at Chattanooga.  His next book, Figures in the Carpet: Finding the Human Person in the American Past, will be published in January 2007.  “Beyond the Right to Life” was published in the Fall 2006 issue of The New Atlantis and is available online.

Raising questions about accountability at the National Institutes of Health...

Researcher Charged with Conflict

“Federal prosecutors on Monday charged a leading government Alzheimer’s researcher with engaging in a criminal conflict of interest by earning $285,000 in private consulting fees from a pharmaceutical giant.

“In a rare criminal case against a government scientist, the National Institutes of Health’s Dr. Trey Sunderland was accused of performing consulting work for Pfizer Inc. that improperly overlapped with his government duties.

“The conflict of interest charge, filed in U.S. District Court in Baltimore, carries a maximum of one year in prison and a $100,000 fine. Prosecutors filed the charge as a criminal information, instead of indictment, signaling a possible plea deal.

“Court papers say Sunderland failed to get proper approval from NIH for his consulting work and did not properly report $285,000 in consulting fees and travel money from Pfizer for work that ‘directly related’ to his federal research responsibilities....”

YAHOO! NEWS/Associated Press – December 4, 2006

“Review boards need to strengthen their disclosure policies and do a better job of policing conflicts...”

Financial Ties Found Among Clinical Trials

by Denise Gellene

More than a third of those overseeing studies report monetary links to pharmaceutical or medical firms.

“More than one-third of experts charged with overseeing clinical trials at medical schools and research hospitals have financial ties to companies that sell pharmaceuticals and medical devices, according to survey results released Wednesday.

“The report found that nearly 7% of experts discussed or voted on clinical studies sponsored by companies they had relationships with or by competitors of those companies—a conflict of interest under federal rules.

“The survey, published in the New England Journal of Medicine, is the first to provide a broad look at financial conflicts of interest among people who sit on institutional review boards.

“The review boards, whose members may include doctors, nurses and community residents, are charged with ensuring the scientific validity of clinical trials and protecting the safety of patients who participate in them....”

Los Angeles Times – November 30, 2006

The uses and abuses of genetic knowledge...

Peering Into the Future: Genetic Testing

by Claudia Kalb

Genetic testing is transforming medicine—and the way families think about their health. As science unlocks the intricate secrets of DNA, we face difficult choices and new challenges.

“The year is 1895 and Pauline Gross, a young seamstress, is scared. Gross knows nothing about the double helix or the human-genome project—such medical triumphs are far in the future. But she does know about a nasty disease called cancer, and it’s running through her family. ‘I’m healthy now,’ she reportedly confides to Dr. Aldred Warthin, a pathologist at the University of Michigan, ‘but I fully expect to die an early death.’

“At the time, Gross’s prediction (she did indeed die young of cancer) was based solely on observation: family members had succumbed to colon and endometrial cancer; she would, too. Today, more than 100 years later, Gross’s relatives have a much more clinical option: genetic testing. With a simple blood test, they can peer into their own DNA, learning—while still perfectly healthy—whether they carry a hereditary gene mutation that has dogged their family for decades and puts them at serious risk. Ami McKay, 38, whose great-grandmother Tilly was Gross’s sister, decided she wanted to know for her children’s sake. In 2002, the answer came back: positive. ‘It changes who you are,’ says McKay.

“Genetic testing is changing medicine, too. Three years after scientists announced they had sequenced the human genome, new knowledge about how our genes affect our health is transforming the way diseases are understood, diagnosed, treated—and even predicted. Today gene tests are available for more than 1,300 diseases, including cystic fibrosis and hemophilia. And now, as genetic screening gets cheaper and faster, researchers are hunting down the biological underpinnings of more-complex disorders that involve multiple genes—big, rampaging illnesses that strike millions of Americans every year. On the list: type 2 diabetes, Alzheimer’s, heart disease and depression. If the scientists are right, genetic tests for some of these diseases could be available by 2010. Testing positive doesn’t guarantee that you’ll get the illness, but it does help determine your risk. ‘We are on the leading edge of a genuine revolution,’ says Dr. Francis Collins, head of the National Human Genome Research Institute....”

Newsweek/MSNBC – December 11, 2006

Worth considering...

Living in the Shadow of Mönchberg:  Prenatal Testing and Genetic Abortion

by Elizabeth R. Schiltz

“...Jim was born mentally retarded, [in a German hospital] in 1952. At the time, the medical professionals counseled my parents to send him to live in an institution. They refused, and with much work and love, they taught Jim to do all those things the medical professionals said he would never do, like talk and walk. Jim graduated from high school. He is totally bilingual—fluent in both German and English. He reads the newspaper every day. He has held the same full-time position in the kitchen of a country club for twenty years now, and does not receive any sort of public assistance. Jim is known around our family as ‘the human jukebox’ for his uncanny ability to remember the lyrics to any song, from any era, by any artist.

“Oma [our German nanny] doted on Jim. When he was a baby, she spent endless hours massaging his legs and encouraging him to walk—indeed, she was the first person in our family to see him actually walk on his own. Once Jim got to be six or seven years old, he would stay with Oma a couple of weeks every summer. One of the things she spent a lot of time doing was teaching him fine table manners. If he did something that didn’t pass her strict standards of etiquette, she would admonish him, ‘Wir sind hier bei vornehme Leute!’—‘We are in the company of distinguished people!’ Oma was emphatic that Jim should take his place in society with ‘distinguished people,’ that nothing about his condition justified any sort of exclusion.

“In some sense, although we did not live in the town of Hadamar, I think that all the kids in my family grew up in the shadow of Mönchberg as well. I cannot remember a time when I didn’t know that the first targets of the Nazis’ gas chambers were people with disabilities. I cannot remember a time when I didn’t know that my brother Jim would probably not have been allowed to live if he had been born just ten years earlier, in the same hospital in Frankfurt where I was later born—a former German military hospital in which my mother, the first time she was there, noticed swastikas carved in the borders along the tops of the walls. I grew up with a visceral awareness of the potential within humanity to decide it is legitimate to kill certain categories of people because of the costs that their lives impose on society. I grew up loving a brother I knew was in one of the categories of humans that the Nazis had determined to possess a lebensunwertes Leben—a ‘life unworthy of life,’ whose cost to society exceeded its worth....”

Editor’s Note: The nanny Theresa Bohm (referred to as Oma, or grandma, above) grew up in Hadamar, Germany, a town situated next to a hill called Mönchberg, which means Monk’s Mountain.  The Franciscan monastery that sits on that hill served as a state hospital and nursing home until the Nazis converted it into one of their infamous “killing centers” in 1940.  According to Elizabeth Schiltz, it was one of “the six institutions spread all over Germany where initially children then later also adults with disabilities such as, in the language of the times, ‘idiocy and mongolism (especially when associated with blindness and deafness); microcephaly; hydrocephaly; malformations of all kinds, especially of limbs, head, and spinal column; and paralysis, including spastic conditions’ were taken, systematically starved to death or gassed, and cremated.”

“Living in the Shadow of Mönchberg” is one of the articles collected by Melinda Tankard Reist in Defiant Birth:  Women Who Resist Medical Eugenics.  Although the essays in this volume are uneven and medical decisions are justified in a variety of ways, it is a valuable look at the experiences of a number of women from around the world who have chosen to resist pressures to abort a “less-than-perfect” baby.  “Living in the Shadow of Mönchberg” was originally published in The Cost of Choice:  Women Evaluate the Impact of Abortion, edited by Erika Bachiochi.  It is available online.  Elizabeth R. Schiltz is associate professor of law at University of St. Thomas, Minneapolis, Minnesota.

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