Living in the Biotech Century -- March 16, 2006

Parental eugenics...using genetic testing to find and abort babies who may be physically and/or mentally impaired...

Illustration by François Berthoud

“Like most American women who give birth to a severely handicapped child, Donna Branca became pregnant with A.J. well before the age of 35. Had she been older, her doctors would almost certainly have recommended amniocentesis to screen for genetic disorders. But she was 31, so they did not, despite the fact that she had an unusual pregnancy. Branca bled during her first trimester, a possible indication of birth defects, and at her midterm sonogram, when she was 20 weeks pregnant, her fetus looked smaller than it should have based on when her doctors originally presumed she conceived. Branca had not gained much weight, either, but her doctors—whom she is barred from identifying, by a legal settlement—saw no cause for alarm. ‘Looking back now, of course, it’s easy to say I should have asked more questions or maybe been a little more concerned,’ she told me last fall, sitting in her grassy backyard in Orangeburg, 20 miles north of Manhattan. Branca is a pretty woman, dark and compact, with a winning suburban New York accent. She glanced at A. J., a 6-year-old with a head of dark curls and the mental capacity of a 6-month-old. Her 3-year-old twins from a subsequent pregnancy ran around collecting acorns....

“What happened [after A. J.’s birth]—the years in which the Brancas came to love A.J. deeply and also to file a multimillion-dollar lawsuit claiming that Donna Branca’s obstetrician’s poor care deprived her of the right to abort him—sheds an uncomfortable light on contemporary expectations about childbearing and on how much control we believe we should have over the babies we give birth to. The technology of prenatal care has been shifting rapidly: sonograms became standard in the 80’s; many new genetic tests became standard in the 90’s. Our ethical responses to the information provided has been shifting as well. As in many other realms, from marriage and its definition to end-of-life issues, those ethics and standards are being hashed out in the courts, in one lawsuit after another. And what those cases are exposing is the relatively new belief that we should have a right to choose which babies come into the world. This belief is built upon two assumptions, both of which have emerged in the past 40 years. The first is the assumption that if we choose to take advantage of contemporary technology, major flaws in our fetus’s health will be detected before birth. The second assumption, more controversial, is that we will be able to do something—namely, end the pregnancy—if those flaws suggest a parenting project we would rather not undertake....”

“When Dave Mahler got liposuction, his co-workers complimented him, even though many weren’t quite sure what was different about him. ‘It’s a mental thing that I feel better,’ said Mahler, a Bellmore, New York-based designer and installer of communications systems. ‘It absolutely did make a difference at work.’

“Mahler is one of a growing number of men seeking cosmetic surgery to stay competitive in a workplace where, experts say, the appearance of energy and enthusiasm are now more valued than age and experience....

“Men are more likely than women to seek facial cosmetic surgery for work-related reasons, by 22 percent to 15 percent, according to the American Academy of Facial Plastic and Reconstructive Surgery.

“Among the most popular procedures with men, industry groups say, are liposuction, Botox injections, surgery for lifting eyelids and laser resurfacing and chemical peel skin treatments—all procedures designed to make a patient look younger and fitter.

“‘One of the biggest drivers in the male marketplace now in cosmetic surgery is men who are 40-plus who use this as a tool to look healthy, to look young, to look vibrant,’ said Michael Atkinson, a sociology professor at McMaster University in Hamilton, Ontario, who has done research on men and cosmetic surgery....”

“Shannon Larratt was a child when he first dreamed about modifying his body. When his father would make pizza and sit with him to watch Star Trek, Larratt was captivated by the diverse looks of people from other worlds. He was particularly taken with the forehead ridges.

“In Larratt’s ideal world, ‘Everyone looks interesting, everyone looks different.’ So when body modification artist Steve Haworth invented a way to implant jewelry under human skin, Larratt jumped on the opportunity.

“After Haworth was done, Larratt’s forehead sported two symmetrical ridges that stretched at a jaunty angle from a spot above his temples down toward his eyebrows.

“Larratt was an early adopter of subdermal implants, a form of 3-D body modification pioneered in 1994 at Haworth’s piercing shop in Phoenix, Arizona. The first human canvas for the art form was a woman from New Zealand who came in and asked for a bracelet. Haworth pondered the challenge, then suggested that he could place series of beads under the skin around her wrist. She enthusiastically agreed.

“In years that followed, subdermal implants became popular in the community of extreme body modification. The process creates a raised area on the skin in a shape of the artist’s choosing. The effect is dramatic: Implants can be most any form you can think of, from Star Trek ridges and small horns, to little stars and hearts sprayed across the chest. Many people with body modifications have combined their implants with tattoos to create often beautiful or terrible effects....”

“A funeral home may have received cash kickbacks in exchange for looking the other way while a body parts ring looted cadavers, including that of ‘Masterpiece Theatre’ host Alistair Cooke, according to two law enforcement officials close to the case.

“The officials said in recent interviews that investigators were targeting New York Mortuary Service Inc., the Manhattan funeral parlor that handled Cooke’s body after he died in 2004.

“They suspect the business conspired with the alleged ringleader—a former oral surgeon named Michael Mastromarino—by alerting him whenever ‘they had a body that they could cut up without anyone knowing,’ one official said.

“The arrangement allowed the ring to harvest human tissue from people who had not given consent or were too old or too sick to donate, said the officials, who spoke on condition of anonymity because the case was still under investigation.

“The tissue—typically skin, bone and tendons—was later sold for use in a variety of common procedures like dental implants and hip replacements....”

The “non-embryonic stem cells” in this trial are from aborted fetuses...

“Oregon researchers are set to begin the first clinical trial in the nation using fetal stem cells to treat infants and children suffering from a rare and fatal brain disease.

“The stem cells will be injected into the brain in an effort to halt the progress of the genetic disorder called Batten disease that leaves its victims blind, speechless and paralyzed before they die.

“Researchers note the cells are taken from fetal tissue—not from developing embryos.

“StemCells Inc. of Palo Alto, Calif., announced last October that it received clearance from the Food and Drug Administration to begin a human trial for its proprietary fetal stem cell product.

“Oregon Health & Science University, which will conduct the clinical trial, emphasized it will be used only to determine whether the product is safe.

“‘While the preclinical research in the laboratory and in animals is promising, it is important to note that this is a safety trial and, to our knowledge, purified neural stem cell transplantation has never been done before,’ said Dr. Robert Steiner, vice chairman of pediatric research at OHSU and the lead investigator in the study.

“Fully formed brain cells have been transplanted to treat Parkinson’s disease patients and stroke victims but this is the first trial involving immature neural cells still capable of transforming themselves into different kinds of brain cells....”

There’s a new outsourcing boom in South Asia - and a billion people are jockeying for the jobs. How India became the global hot spot for drug trials.

Full-size image

S. P. Kalantri (in white), a doctor in central India, has enrolled a quarter of his stroke patients in clinical trials.

“The town of Sevagram in central India has long been known for three things: its heat, which is oppressive even by Indian standards; its snakes, which are abundant; and its ashram, a derelict and increasingly malarial retreat preserved as a tribute to Mohandas Gandhi, who lived here and was known for tenderly relocating the poisonous vipers that slithered into his shack.

“Despite this intemperate setting, Sevagram’s hospital has a good reputation. Though the power fails often, forcing medics to use the backlit screens of their cell phones for illumination, the standard of care is higher than at many of the country’s public hospitals, and the facilities are comparatively plush. At the nearby government medical center in Nagpur, for instance, patients sometimes have to sleep on mattresses on the floor.

“Last year, Sevagram began garnering even more cachet. A German pharmaceutical company called Boehringer Ingelheim, whose latest stroke-prevention drug was making its way through the clinical pipeline, approved the town’s hospital as a trial site - one of 28 in India recruiting stroke victims to round out the company’s 18,500-person study....”

Solid statistical evidence that parental-involvement laws reduce the incidence of abortion among minors...

“On Monday [March 6], the New York Times published an article arguing that recently enacted parental-involvement laws have been unable to reduce the incidence of abortion among teens. On its surface, the analysis looks convincing. In 6 states, the authors track the percentage of abortions among pregnancies for girls under 18 both before and after the passage of parental-involvement legislation. According to the data presented by the authors, the passage of legislation appears to do little to change this percentage. Furthermore, after the enactment of legislation, the childbearing decisions of minors continue to closely track the childbearing decisions of women ages 18 to 19—women who would not be directly affected by parental-involvement legislation.

“However, there exist some significant shortcomings with the Times’s analysis....”

South Dakota governor Mike Rounds

Governor Rounds said he expects the law to be challenged in court

“A US state has signed into law a bill banning most abortions, in a move aimed to force the US Supreme Court to reconsider its key ruling on the issue.

“The South Dakota law - approved by the governor on Monday - makes it a crime for doctors to perform terminations.

“Exceptions will be made if a woman’s life is at risk, but not in cases of rape or incest.

“Many believe new appointments to the Supreme Court may have tipped the balance in favour of anti-abortionists....”

A drug that has been lowering cholesterol for 20 years now appears to have dramatic benefits for other conditions.

“Every so often, something very strange happens in the world of medicine. A drug that is tested for one disease turns out to cure another. And another. And another. And the more rigorously it’s tested, the better it works. Until recently, aspirin had perhaps the strongest claim to ‘wonder drug’ status, but many doctors believe it is about to be toppled by a rival in the shape of statins.

“These cholesterol-lowering drugs have been around since the late 1980s but - for once - have been severely under-hyped. Only in the past 18 months have their incredible benefits been revealed, and they seem to have fewer side effects than aspirin. Most important, they dramatically cut the risk of heart attacks and strokes, the biggest causes of death in the West. It is also claimed that they reduce the risk of dementia, could ease some symptoms of multiple sclerosis and may even trigger the ‘suicide’ of some cancer cells....

“The most exciting results came from Oxford University’s Heart Protection Study, the world’s largest study of cholesterol-lowering drugs, published in July 2002. Researchers recruited 20,000 people with an increased risk of cardiovascular disease - those who had diabetes, angina or high blood pressure, plus those who had already had heart attacks, strokes and mini-strokes. Over seven years, they discovered that taking a statin every day cut the risk of heart disease and stroke by a third. But the remarkable thing was that the drugs also worked on those whose cholesterol levels were normal, as well as on people with very high levels.

“When the findings were published in The Lancet, the editor described them as ‘the most far-reaching results for the treatment and prevention of heart disease and strokes that we have seen in a generation....’”

“Contrary to what one might at first think, there is no contradiction in terms here, since complacency does after all have its norms, and even its demands, to which society ultimately submits....

“The ethics of complacency legitimizes and recognizes all thought, all behavior, and all ways of life–on the condition, of course, that they do not oppose complacency itself. In doing so, this ethics constitutes a worldview, for it is not merely the attitude of the smiling sage, or of the fool who takes what comes without regard to its consequences.

“The ethics of complacency’s indulgent accommodation of everything corresponds to a refusal to accept any established limits, or to a refusal to refuse, which brings to mind the catchphrase of the 1968 generation, ‘It is forbidden to forbid.’ The sweeping away of moral taboos during the preceding two decades was probably due less to a fading of the previously dominant religious thinking as to an inability of traditional thought to justify the barriers that, in the end, were being propped up only by the force of habit. Traditional thought had come to live more through its institutions than through its points of reference. We know that institutions, created to embody and perpetuate the certitude of these points of reference, often ended up abusively replacing what they were supposed to protect, and became mere hollow shells in the process. Thus, the ethics of complacency never had to impose itself by arguing for its legitimacy. On the contrary, it was able to impose itself without any argument at all, filling the vacuum left by other ethical systems whose points of reference had been lost along the way....

“The appearance of the ethics of complacency marks a complete rupture with what we knew before, not only concerning the source of norms, but also concerning the spectrum that the identified ‘good’ covers. As we know, modernity is the era where the determinant of what is good is no longer an authority or doctrine, but the individual himself. But everything is happening as if the rise of subjectivism had conjured up not only a new source of the good, but also, and probably in a related way, a good that serves a different purpose.

“The break with the notion of an objective ‘good,’ which specifically characterizes modernity, allows the rise of a ‘good’ defined by each individual within the sovereignty of his own conscience. The ‘good,’ as something objective and given from the exterior, was the product of a religious or ideological worldview and brought with it a hierarchy of norms that rested upon a truth. It proposed, or imposed, not only the meaning of existence–it identified what existence can expect–but the very blueprint of a ‘good’ existence. It brought with it the architecture or model of a respectable human life that was generally esteemed and devoted to happiness. Ancient morality, and later, Christianity–and even modern ideologies–spoke less of a series of piecemeal collection of ‘goods’ as of a ‘good life....’”

“The Morality of Complacency” was published in the electronic journal The New Pantagruel (Issue 1.2, Spring 2004) and is available online. The original essay was published as Chapter 6 in Icarus Fallen: The Search for Meaning in a Uncertain World. Chantal Delsol, a well-know political philosopher in France, is professor of philosophy at the University of Marne-La-Vallée near Paris.

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