Living in the Biotech Century -- February 15, 2006

“Speculation about a coming age of genetically modified athletes has been rife for several years. The Turin winter games will probably not mark their debut, but some experts believe gene doping may not be far away.

“In March of 2002, the World Anti-Doping Agency (WADA), the multi-national group that leads the fight against performance-enhancing drugs in sports, sponsored a meeting at the Banbury Center, a conference facility at the famed Cold Spring Harbor genetics lab on Long Island in New York. Doping authorities met with genetic scientists to ask if athletes and their handlers would soon be altering their very genomes in an effort to soup up their performance. Was the age of the genetically-enhanced athlete upon us?

“The meeting resulted in a good deal of speculation and public fretting, both by pundits and by WADA. But much of that fretting, said experts in genetic science, was misplaced. Using genes to enhance athletic prowess was still far away.

“The second meeting to assess the future of genetic tinkering in sport was held in December [2004] in Stockholm, but now, says Theodore Friedmann, one of the world’s leading experts on gene therapy to treat disease and the chairman of WADA’s gene-doping panel, ‘I’m not so sanguine as I was that this is far off in the future.’ Scientists studying genetics, Friedmann reports, ‘often say they are approached frequently by athletes, trainers, entourage-type people asking what is available....’”

Close call – before ‘pulling the plug,’ her guardian finally decided to visit Haleigh...

“In the court (and courts) of life and death, a little 11-year-old Massachusetts girl named Haleigh Poutre could be the next Terri Schiavo. For those who have not heard the tragic story, Haleigh was beaten nearly to death last September, allegedly by her adoptive mother and stepfather. The beating left her unconscious and barely clinging to life.

“Within a week or so of the beating, her doctors had written her off. They apparently told Haleigh’s court-appointed guardian, Harry Spence, that she was ‘virtually brain dead.’ Even though he had never visited her, Spence quickly went to court seeking permission to remove her respirator and feeding tube. The court agreed, a decision affirmed recently by the supreme court of Massachusetts.

“And so, no doubt with the best of intentions, a little girl who had already suffered so much was stripped by the Commonwealth of Massachusetts of even the chance to fight to stay alive. If she didn’t stop breathing when the respirator was removed, which doctors expected, she would slowly dehydrate to death.

“Then came the unexpected: Before ‘pulling the plug’ on Haleigh, Spence finally decided to visit her. He was stunned. Rather than finding a little girl with ‘not a chance’ of recovery, as doctors had described Haleigh’s condition to him (as reported by the Boston Globe), Haleigh was conscious. She was able to give Spence a yellow block when asked to by a social worker and respond to other simple requests.

“Laudably, Spence immediately called off the dehydration. Haleigh is now off her respirator and breathing on her own. She has been transferred out of the hospital and is currently being treated in a rehabilitation center....”

“It’s clear that voluntary disclosure is not working and even small gifts can influence behavior...”

Ties between doctors and vendors undermine scientific integrity and patient care, group says.

“Issuing a sweeping call for ethical reform in medicine, a group of leading physicians and scholars said doctors shouldn’t accept drug samples, junkets or even ballpoint pens from drug or medical-device companies.

“In today’s Journal of the American Medical Assn. [Jan. 25], or JAMA, 11 experts warned that the financial ties between physicians and drug and device vendors are undermining scientific integrity and patient care.

“The authors said existing guidelines were ineffective and called on university-affiliated hospitals to take the lead in establishing stricter policies that would bar gifts, restrict corporate financial ties and require transparency in medical research contracts.

“The recommendations mark the first high-profile effort from within the medical profession to broadly limit financial entanglements between doctors and companies.

“Concerns about the influence of marketing on medical decisions have been on the rise, fueled recently by courtroom revelations about Merck & Co.’s lobbying of physicians for its now-banned blockbuster pain reliever Vioxx....”

story.down.couch.ap.gif

Diane and David Petersohn hope to adopt an eighth child who has Down syndrome like daughter Darcie, center.

“Seven was not enough for Diane and David Petersohn, so they decided to adopt.

“And since one of their seven children has Down syndrome, they decided they wanted another one with Down syndrome.

“The Petersohns found that they had plenty of company. The couple from Liberty, Missouri, placed their names on national lists of people seeking to adopt children with Down syndrome, and waited.

“After waiting nearly three years they turned to a private agency that facilitates international adoptions. Today, they’re raising money and completing paperwork to adopt a 6-month-old boy from Ecuador who has the syndrome, a type of retardation caused by a genetic malfunction.

“Most who seek to adopt Down syndrome children have had a family member, friend or acquaintance with the disorder, or work with them in medical or school professions....”

Editor’s Note: This is a very encouraging story, but sadly it doesn’t give a complete picture of current attitudes towards babies with Down syndrome. For the broader perspective, see the article, “Eugenics By Abortion,” by columnist George Will whose son Jon has Down syndrome. In this column, Will refers to current statistics that show that “more than 80 percent of the babies diagnosed prenatally with Down syndrome are aborted.”

Progress resulting from numerous factors...

Cancer Deaths Decline for 1st Time Since 1930

The drop in U.S. is slight but marks a milestone, as advances catch up with demographics.

“For the first time since the government began keeping national death statistics in 1930, the number of cancer deaths in the United States has fallen as improvements in diagnosis, therapy and prevention have finally overtaken increases caused by aging and population growth.

“The number of deaths declined by only a sliver—369 out of about 557,000 between 2002 and 2003, the latest years for which data are available.

“But the American Cancer Society, which conducted the analysis, believes the downward trend is solid, and it is projecting a substantially larger decrease this year.

“The results ‘mark a remarkable turn in our decades-long fight to eliminate cancer as a major health threat,’ said American Cancer Society Chief Executive John R. Seffrin. ‘For the first time, the advances we have made in prevention, early detection and treatment are outpacing even the population factors that...obscured that success....’”

“Chad Livdahl and Zahra Karim made more than $1.7 million selling an unapproved botulism toxin to hundreds of doctors as a cheap alternative to the anti-wrinkle drug Botox.

“On Thursday, the 34-year-old married doctors learned what the scheme cost them: Up to nine years in prison for him, and six years behind bars for her.

“Karim likely will serve less than two years because she will be transferred to her native Canada and is eligible for early release under a plea deal, her attorney said.

“Livdahl has cooperated with the government’s investigation into the doctors who were once his customers and could get time shaved off his sentence for continued cooperation.

“U.S. District Court Judge James Cohn also ordered both to pay more than $345,000 in restitution....”

Francois Mori / AP

Isabelle Dinoire, the woman who received the world’s first partial face transplant with part of a nose, chin and lips, addresses reporters in her first press appearance since the November surgery in France.

“The woman who received the world’s first partial face transplant showed off her new features in a room full of reporters and cameras on Monday.

“‘I now have a face like everyone else,’ Isabelle Dinoire said at her first news conference since the groundbreaking surgery in November. ‘A door to the future is opening.’

“Her speech was heavily slurred and difficult to understand, but she explained how she was disfigured by a dog bite last year and she thanked the family of the donor who gave her new lips, a chin and nose.

“A circular scar was still visible where the face tissue was attached in the 15-hour operation on Nov. 27 in Amiens [France]. Dinoire appeared to still have great difficulty moving or even closing her mouth, which often hung open. But she said that she was regaining sensation.

“‘I can open my mouth and eat. I feel my lips, my nose and my mouth,’ she said. During the news conference, while one of her surgeons was speaking, she lifted a cup to her lips and appeared to drink....”

“An inhaled form of insulin won federal approval yesterday, offering the first alternative to injections for millions of people with diabetes since the drug was introduced in the 1920’s.

“The new inhaler could offer more convenience and less pain for many of the roughly five million Americans already using insulin, diabetes experts say.

“Analysts predict that the therapy, called Exubera and sold by Pfizer, will be popular, with worldwide sales of as much as $2 billion a year by 2010. Pfizer said it planned to begin selling Exubera this summer.

“But some doctors say they are concerned that Exubera’s risks to the lungs have not been properly tested, especially because Exubera works no better than injected insulin at controlling blood sugar. In clinical trials, Exubera caused a slight reduction in patients’ ability to breathe....”

“About eight million children worldwide are born every year with a serious birth defect—many of whom die or are disabled—a stunning and largely hidden toll, says research released on Monday by the March of Dimes.

“The March of Dimes is a charitable organisation that draws its name from the 10-cent United States coin called a dime.

“While birth defects are under-appreciated globally, most occur in poor countries, where babies can languish with problems easily fixed or even prevented in wealthier nations, the report found.

“But the researchers said some innovative programs in Iran and Chile show that effective preventions don’t have to be costly.

“Indeed, about 70 percent of birth defects could be either prevented, repaired or ameliorated, they concluded....”

Ross has her life back thanks to a stem-cell transplant from her own bone marrow

“For all of her 20s, when Edjuana Ross should have been relishing the thrill of early adulthood, she was instead in and out of hospitals, battling a disease that attacked her skin, brain and heart.

“Now, at 33, she has her life back, thanks to a stem-cell transplant from her own bone marrow, a drastic, experimental treatment that could be promising for patients with severe lupus.

“Ross’ illness is in remission for the first time since her diagnosis shortly after high school graduation.

“‘I'm just trying to get used to being well, and it’s a very weird feeling,’ Ross said.

“The Park Forest, Ill., woman is among 48 patients with severe lupus who had the treatment at Northwestern Memorial Hospital. Thirty-three patients have had no disease symptoms for up to more than seven years following their transplants, said Northwestern’s Dr. Richard Burt, who led the study....”

“Within a few years there will not be enough primary care physicians to take care of an aging population...”

“Primary care — the basic medical care that people get when they visit their doctors for routine physicals and minor problems — could fall apart in the United States without immediate reforms, the American College of Physicians said Monday.

“‘Primary care is on the verge of collapse,’ said the organization, a professional group which certifies internists, in a statement. ‘Very few young physicians are going into primary care and those already in practice are under such stress that they are looking for an exit strategy.’

“Dropping incomes coupled with difficulties in juggling patients, soaring bills and policies from insurers that encourage rushed office visits all mean that more primary care doctors are retiring than are graduating from medical school, the ACP said in its report.

“I am not at all a scientist. And yet, like every human inhabitant of the modern world, I have experienced many of the effects (costs and benefits) of science; I have received a great deal of hearsay of it; and I know that I am always under its influence and mercy. Though I am unable to comment on its methods or the truth of its discoveries, I am nonetheless appropriately interested in its motives—in what it thinks it is doing and how it justifies itself. I agree with the proposition that science (or ‘science-and-technology’) has become a sort of religion. I want to know by what power it has crowned itself and mitered itself.

“Reductionism (ultimately, the empirical explanability of everything and a cornerstone of science), has uses that are appropriate, and it also can be used inappropriately. It is appropriately used as a way (one way) of understanding what is empirically known or empirically knowable. When it becomes merely an intellectual ‘position’ confronting what is not empirically known or knowable, then it becomes very quickly absurd, and also grossly desensitizing and false.

“There obviously is a necessary usefulness in the processes of reduction. They are indispensable to scientists--and to the rest of us as well. It is valuable (sometimes) to know the parts of a thing and how they are joined together, to know what things do and do not have in common, and to know the laws or principles by which things cohere, live, and act. Such inquiries are native to human thought and work.

“But reductionism also has one inherent limitation that is paramount, and that is abstraction: its tendency to allow the particular to be absorbed or obscured by the general. It is a curious paradox of science that its empirical knowledge of the material world gives rise to abstractions such as statistical averages which have no materiality and exist only as ideas. There is, empirically speaking, no average and no type. Between the species and the specimen the creature itself, the individual creature, is lost. Having been classified, dissected, and explained, the creature has disappeared into its class, anatomy, and explanation. The tendency is to equate the creature (or its habitat) with one’s formalized knowledge of it.

“The uniqueness of an individual creature is inherent, not in its physical or behavioral anomalies, but in its life. Its life is not its ‘life history,’ the typical cycle of members of its species from conception to reproduction to death. Its life is all that happens to it in its place. Its wholeness is inherent in its life, not in its physiology or biology. This wholeness of creatures and places together is never going to be apparent to an intelligence coldly determined to be empirical or objective. It shows itself to affection and familiarity....”

Wendell Berry is a farmer and philosopher and prolific author of poems, essays, novels, and short stories. He and his wife, Tanya, have lived on a farm in Henry county Kentucky for some forty years. Wendell Berry has also written a book on the subject of scientific reductionism, Life is a Miracle: An Essay Against Modern Superstition. The article from which this selection was excerpted is available online.

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