The Humanitas Project

A CENTER FOR BIOETHICS EDUCATION

Living in the Biotech Century

News, Resources, and Commentary

January 8, 2005


 

 

Disease, desperation, poor theology, and moral complicity...

 

ALS Treatment Creates Crisis of Faith for Two Baptist Families

 

 

Wilbur and Edith Newton

“Wilbur Newton has traveled to a fearsome destination.

 

“The once-healthy hunter, family man, provider, prankster and Baptist layman no longer can move, talk or feed himself. He is like a foreigner trying haltingly to communicate in a strange country…

 

“Five years ago, his leg dragged unexpectedly as he tried to run across a road. It took months and several doctors to find out why: His motor neurons, cells that transmit signals from his central nervous system to his muscles, were dying. He had amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease, or ALS. Incurable, its cause unknown, it generally kills within two to five years.

 

“At his party, the former welder sat propped up in an easy chair, talking with his eyes. They were so bright and happy, visitors commented on it. The reason seemed obvious. He was about to strike out on a journey full of hope—a 20-hour flight to China to seek a controversial ALS treatment…

 

“This year…Newton learned about a new treatment for ALS patients in Beijing, one so abhorrent to Lyles that he kept it from his wife for months. A neurosurgeon, Hongyun Huang, had implanted tissue from aborted fetuses into the brains and spinal cords of paralyzed patients with reports of some success, and he had started to work on ALS patients….”

 

BaptistStandard.com/Religion News Service – Posted 10/29/04

 

For an excellent discussion of moral complicity (participation in an immoral act) in using fetal tissue obtained from aborted babies, link to Scott Rae’s “Spare Parts from the Unborn:  The Ethics of Fetal Tissue Transplantation.”

 

Another good discussion of moral complicity in the use of fetal tissue can be found at the web site of The Christian Medical Association:  “Fetal Tissue for Experimentation and Transplantation.”

 

 

Please forward this e-mail to anyone who might be interested in staying abreast of the rapidly changing developments in biotechnology and in the related area of bioethics.  For more information on The Humanitas Project, contact Michael Poore, Executive Director, at 931-528-2408 or .  Or visit The Humanitas Project web site at www.humanitas.org.

 

 

An essay reflecting on perfection and unconditional love…

 

Although My Child Was Born With a Congenital Defect, I Fear for a World in Which Parents Can Choose the Perfect Baby

 

 

“Nobody can take issue with the desire of all parents to do the very best for their future children, or with the natural wish to spare those children from distress, suffering, pain and all the ills that flesh is heir to.

 

“The pregnant mother says she just wants the baby to be ‘all right’; the father whose child is born with a congenital defect howls to the heavens: ‘Why?’ If I had inherited a genetic form of bowel cancer, I would naturally hope not to pass it on to my child. Until now, hoping was all that it was possible to do.

 

“But the news this week [Nov. 2, 2004] that people who are genetically predisposed to getting cancer have won the right to select embryos free from the gene responsible raises—once more—the issue of designer babies.

 

“Medical advances have always caused debate, with most of us in the middle, neither philosophers nor doctors, unsure what to think. Still, we have to think.

 

“Preimplantation Genetic Diagnosis is forcing us to re-evaluate our expectations of life and death as never before…

 

“Only embryos free of the faulty gene will be implanted—a test previously approved only for untreatable disorders such as Huntington’s disease and cystic fibrosis. This sets a precedent so that, in future, doctors may be allowed to ‘cherry pick’ embryos for a much wider range of traits…

 

“The love of parent for child should be unconditional, and it can be deepened beyond words by the very illnesses which seem to be such a terrifying threat.

 

“I was privileged to meet a mother who lost two of her three children to cystic fibrosis, and I know she would not want to have lived a life without those wonderful people whose memory she cherishes and whose lives enhanced those of everyone they met.

 

“Believe me, even in the worst days of illness there can be moments of indescribable love and joy.

 

“Yes, of course, you would want to relieve that mother from the pain of loss, and her children from the suffering of their 20-odd years. Yet there is no advance in medical science that can spare us from all pain or suffering, and coming to terms with that truth is a vital part of human life….”

 

RedNova.com – November 2, 2004

 


Sometimes it's not the teeth; it's the soul…

 

Sometimes, Your New Smile Will Make You Frown

 

 

“Miriam’s new smile is wide and pretty, with large, white, perfectly spaced teeth. Before she had her front teeth covered with porcelain veneers, they were crooked, worn at the tips and stained at the roots….

 

“Such are the before-and-after photos in the binder that Dr. Debra C. Glassman, a Manhattan dentist, shows patients to let them judge her work. And such are the near-perfect smiles people have come to expect from veneers, porcelain shells bonded to the front side of the teeth.

 

“The popularity of veneers has soared, as television viewers have seen what they can do for contestants on makeover programs. More and more people are willing to spend $500 to $1,500 per tooth to cover up their chipped, stained or worn down enamel, or to give the appearance of straightness to a crooked smile….

 

“Some veneers are so square or white that they don’t look real. Others are poorly placed and end up chipping or breaking. Still others fall off. That is what happened to Kathy, whose veneers detached during a Manhattan business lunch….

 

“The finished product may brighten up teeth. But ultimately, the dazzle in a person’s smile depends on something deeper….”

 

New York Times – January 4, 2005

 


Wise counsel—consider the ‘law of unintended consequences’ when proposing new abortion legislation…

 

A Pro-Life Mistake

by Clarke D. Forsythe, Director, AUL Project in Law & Bioethics

 

Strategize wisely. It’s a life or death decision.

 

 

“Someone’s overdosing on President George W. Bush’s reelection. There are, reportedly, plans afoot in some states to introduce bills prohibiting abortion in 2005. The old proverb ‘Zeal without knowledge is folly’ counsels some rethinking here.

 

“Such plans, however sincerely intentioned, are premature. They are the product of wishful thinking that disregards the reality in the Supreme Court today. Such bills will divide friendly forces, waste precious resources, and undermine the credibility and political survival of pro-life legislators in the states that consider them. And there are alternative policies, better calculated to make a positive difference in 2005.

 

“The hostility of the current justices to strong pro-life legislation is plainly expressed in the Supreme Court’s most recent statement on abortion—the Carhart case in June, 2000. There, five justices—O’Connor, Souter, Ginsberg, Breyer, and Stevens—made clear that they strongly supported Roe v. Wade, and fiercely rejected the Nebraska prohibition on partial-birth abortion, in the belief that even restrictions on partial-birth abortion threatened Roe. Those same five are still on the Court today. And a sixth, Justice Anthony Kennedy, made clear that he supported Roe, even though he would have upheld Nebraska’s prohibition on partial-birth abortion…

 

“Given the Supreme Court and the experience with the federal partial-birth abortion law, the outcome of abortion-prohibition bills in 2005 is certain: Federal courts will immediately apply injunctions against the enforcement of such laws, federal appeals courts will agree, the Supreme Court will deny review, the laws will never go into effect, and the state legislature will get an expensive bill from the ACLU. Prohibitions on abortion are not carefully calculated, in light of current obstacles, but clearly dead on arrival in 2005….”

 

National Review Online – December 16, 2004

 


Looking at abortion’s bottom line…

 

Planned Parenthood Has Profitable Year

by Steve Jordahl

 

Group performed about 250,000 abortions and made $35 million in 2004.

 

 

“Abortions have increased, profits are up and federal dollars keep rolling in, according to the 2004 annual report of the Planned Parenthood Federation of America.

 

“The group performed almost a quarter million abortions last year and netted a profit of $35 million—despite closing some clinics—thanks to a lot of taxpayer funding.

 

“‘We estimate that Planned Parenthood took in $104 million from doing abortions, and that that represented about one-third of the total income that they had from their clinics around the country,’ said Jim Sedlak, founder and president of STOPP International, an outreach of the American Life League.

 

“‘Planned Parenthood insists as a business that every one of their clinics must make money or it gets closed down. It makes no difference what the federation as a whole is doing.’

 

“Nationally, Planned Parenthood took in more than a quarter of a billion dollars from the government in 2004. Randall O’Bannon, director of research for the National Right to Life Committee, said there is an odd silver lining to that number for pro-life Americans…

 

“While Planned Parenthood has little competition in the abortion market, it is vastly outgunned in other areas of women’s health care, according to Dr. Julie Parton, manager of Focus on the Family's pregnancy resource ministry….”

 

Family News in Focus – December 21, 2004

 


“Make no mistake, this is the science of engineering winners…”

 

Gene Test for Childs Sporting Chance

 

 

“Want to know if your child is naturally geared to become the next Kelly Holmes or Matthew Pinsent? A biotechnology company based in Australia has developed a DNA test that it claims can identify whether a child has the genetic make-up to excel in either sprint and power sports or endurance events.

 

“The test, available online in kit form for about A$110 (£43) uses a DNA sample taken from a mouth swab to detect variations of a gene known as ACTN3. Studies conducted by the Australian Institute of Sport, have linked this gene to sporting potential.

 

“Deon Venter, a director of Genetic Technologies, said: ‘It’s not a test that says you are going to be a winner or a loser. It’s a test that appears, on the evidence we have so far, to head people into choosing the best event and in some cases the optimal sport.’

 

“The test identifies variations in the two copies that everyone has of the ACTN3 gene. Professor Venter said those with the ‘normal’ variation produced a protein found in ‘fast-twitch’ muscle fibres, giving them an edge in sprinting and power sports, such as speed skating and short-distance swimming, track and cycling events….”

 

TimesOnline – December 20, 2004

 


If confirmed, a remarkable advance for adult stem cell research…

 

JHU Scientists Develop Method to Replicate Stem Cells from the Heart

by David March

Johns Hopkins Medicine

 

 

“In human and animal studies, scientists at Johns Hopkins have developed a fast and safe method for collecting heart stem cells from remarkably small amounts of biopsied heart tissue (15 mg or less), and growing the cells in the lab to get more.

 

“The technique gets the job done within four weeks, producing enough stem cells to conceivably be used to repair heart tissue clinically. The resulting clusters, called cardiospheres, contain cells that retain the ability to regenerate themselves and to develop into more specialized heart cells that can conduct electrical currents and contract like heart muscle should.

 

“Their findings, if affirmed in further clinical trials, could potentially offer patients a means of using their own stem cells to repair heart tissue soon after they have suffered a heart attack, or to regenerate weakened muscle resulting from heart failure, perhaps averting the need for heart transplants. By using a person’s own adult stem cells instead of those from another donor, there would be no risk of triggering an immune response that could cause rejection….”

 

The Gazette – The Johns Hopkins University – December 20, 2004

 


Drawing the atlas of the brain…

 

Scientists ‘Map’ Key Brain Genes 

 

 

The map should help research into neurological diseases

“US scientists have mapped a key network of gene ‘switches’ in the brain which could aid neurological research.

 

“These gene regulators govern whether parts of the brain develop properly.

 

“The ‘atlas,’ created by researchers at the Dana-Farber Cancer Institute in Boston and detailed in Science used mouse brains to pinpoint the genes.

 

“But the map applies to human brains too, and is hoped it will help research into conditions, such as brain tumours, linked to mutations in these genes….

 

“Using genetic probes to investigate thin sections of mouse brains, the scientists found that only 349 of the TF genes were expressed in specific regions, rather than throughout the brain, like the rest.

 

“They concluded these genes controlled the development of the particular areas or structures in which they were uniquely expressed….”

 

BBC News – December 23, 2004

 


Assessing conflicts of interest at the FDA…

 

FDA: Scientist Can Publish Controversial Vioxx Safety Data

 

 

“The Food and Drug Administration has given a scientist permission to publish data indicating that as many as 139,000 people had heart attacks that may be linked to Vioxx, the scientist’s lawyer said Monday.

 

“Dr. David Graham, who works in the FDA’s office of drug safety, has said he was not allowed to publish his data questioning the safety of Vioxx, a pain medication principally used to treat osteroarthritis. Additionally, an FDA official sent email messages to the medical journal Lancet trying to persuade the journal not to publish the data.

 

“Citing its own safety concerns, manufacturer Merck voluntarily pulled Vioxx from the market in late September.

 

“Graham testified in November before a Senate committee that the FDA fumbled in its handling of safety concerns around Vioxx and had mishandled concerns about five other widely used drugs. He contended that FDA has an inherent conflict of interest that triggers ‘denial, rejection and heat’ when safety questions emerge about products it has approved….”

 

CNN.com – January 4, 2005

 


For whom do these top government scientists work?

 

At Least 530 Scientists Got Fees, Stock in Conflicts of Interest, Records Show

 

 

“For 15 million Americans, it is a daily ritual: gulping down a pill to reduce cholesterol. They do it because their doctors tell them to. Their doctors, in turn, rely on recommendations from the National Institutes of Health and its scientists, such as Dr. H. Bryan Brewer Jr.

 

“Brewer, as a leader at the NIH, was part of a team that gave the nation new cholesterol guidelines that were expected to prompt millions more people to take the daily pill. He also has written favorably of a specific brand of cholesterol medication, Crestor.

 

“What doctors were not told for years is this: While making recommendations in the name of the NIH, Brewer was working for the companies that sell the drugs. Government and company records show that from 2001 to 2003 he accepted about $114,000 in consulting fees from four companies making or developing cholesterol medications, including $31,000 from the maker of Crestor.

 

“Brewer was far from alone in taking industry money: At least 530 government scientists at the NIH, the nation’s pre-eminent agency for medical research, have taken fees, stock or stock options from biomedical companies in the past five years, records show.

 

“The director of NIH, Dr. Elias Zerhouni, has told Congress that outside work should be allowed if ‘the scientist is giving advice in an area…that is not part of his official duties.’

 

“Information gathered by a congressional committee, in addition to company records and 15,000 pages of government documents obtained by the Los Angeles Times under the Freedom of Information Act, show that NIH researchers have repeatedly crossed Zerhouni’s line.…”

 

thenewstribune.com/Los Angeles Times – December 22, 2004

 


Conclusion:  Patients can do much to protect themselves…

 

Are U.S. Drugs Safe? A Review of 2004's Drug Controversies 

by Daniel DeNoon

 

Are medicines safe for us and for our children? Americans once thought so. Now we aren't so sure.

 

 

“It’s been a shaky year for our faith in U.S. drug safety:

 

“Heart safety questions led to the withdrawal of the arthritis drug Vioxx. Vioxx’s sister drugs Celebrex and Bextra are reported to have heart safety concerns. The Food and Drug Administration releases heart warnings about the over-the-counter pain reliever Aleve. Antidepressant drugs now carry a new ‘black-box’ warning about suicide risk. The ADHD drug Strattera is associated with—in a very small number of patients—serious liver damage.

 

“A maverick FDA drug reviewer told Congress that several drugs now on the market may not be safe. He acknowledged he did not speak for the FDA, which finds the drugs safe when used properly. The drugs (Crestor, Bextra, Meridia, Accutane, and Serevent) remain on the market.

 

“A three-year-old study of the FDA’s drug review process surfaced late this year. It shows that nearly one in five FDA reviewers felt pressured to approve a drug, and that two out of three FDA reviewers lack confidence in how the FDA monitors the safety of a drug once it is approved. The report, from the Health and Human Service’s inspector general’s office, concludes that ‘these findings present a significant warning signal.’…”

 

Web MD/Fox News – January 01, 2005

 


Just what is required to be a mommy?

 

Romanian, 67, Pregnant with Twins

 

 

Adriana Iliescu says she expects to live for many years yet

“Romanian doctors say a 67-year-old woman is seven months pregnant with twin girls after fertility treatment.

 

“If the pregnancy comes to full term, it is believed that Adriana Iliescu, an author and academic, will become the oldest recorded mother.

 

“Mrs Iliescu told local television she had always wanted to be a mother but had been unable to conceive naturally.

 

“She says she is optimistic about her future as a mother, claiming her family has a history of longevity….”

 

The BBC Online – December 29, 2004

 


Worth considering…

 

From Wonder Drugs and Double Standards

 

 

“If you are white, college educated, and fortunate enough to have your children in a good public or private school, then you probably will already have formed an opinion about kids and drugs such as Ritalin.  The reason is that if you happen to be all those things, then you are part of the American demographic in which psychiatric drug-taking among kids has become something like cognitive orthodontics—in other words, routine.  Just how routine the drugs have become in some places can be seen in the following anecdote told to me by a friend in 2003.

 

“This friend had a teenage daughter who was struggling in a particularly challenging school, and because she was unhappy about her academic performance, a doctor was consulted.  That professional did not believe she had any real disorder but did prescribe a trial run of Concerta (a stimulant closely related to Ritalin) to see if it improved matters.  Sure enough, the daughter perked up; she felt better about her schoolwork and did better at it.  The experiment seemed to work.

 

“Was this success?  Apparently, yes.  And yet my friend felt uneasy about it for this reason:  One night, after treating his daughter and several of her classmate to dinner out, he realized that all the other kids at the table were taking some kind of psychotropic medicine, too.  All had been prescribed similar ‘enhancements.’  Despite his own brief and positive experience with such drugs, this outcome quite unexpectedly disturbed him.  After all, one case in such a group might make sense, or maybe two, but were so many otherwise socially and financially advantaged students really in need of mind-altering drugs just to get through the day?  What, he wondered, did that say about us and about our world?”

 

Home-Alone America:  The Hidden Toll of Day Care, Behavioral Drugs, and other Parental Substitutes, by Mary Eberstadt (Sentinel/The Penguin Group, 2004), pp. 81-82.

 

 



 

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