Living in the Biotech Century -- June 30, 2006

As the number of genetic tests increase, this sort of surgery will become more and more common...

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Cousins Bill Bradfield, from left, Mike Slabaugh, Diane Sindt, and Kitty Elliot look at family pictures in Las Vegas in May.

“Growing up, they watched helplessly as a rare hereditary stomach cancer killed their grandmother and some of their parents, aunts and uncles.

“Determined to outsmart the cancer, they turned to genetic testing. Upon learning they had inherited grandmother Golda Bradfield’s flawed gene, they had two options: Risk the odds that they might not develop cancer, with a 70 percent chance they would; or have their stomachs removed....

“All the cousins chose the life-changing operation. Doctors say they’re the largest family to have preventive surgery to protect themselves from hereditary stomach cancer....

“Advances in genetic testing are increasingly giving families with bad genes a chance to see the future, sometimes with the hope of pre-emptive action. People have had stomachs, breasts, ovaries, colons or thyroid glands removed when genetic tests showed they carried a defective gene that gave them a high risk of cancer....”

He Could Risk Brain Surgery or Accept Worsening Symptoms. For Him, the Choice Was Obvious.

“I am by nature impulsive. I was in the Virgin Islands on vacation with my daughter when I decided to have brain surgery. Being in such a heavenly place made me both optimistic about what life could be and intolerant of how Parkinson’s disease was slowly eliminating my ability to enjoy it.

“When I returned home, I called my neurologist and told her I wanted to have deep brain stimulation, or DBS.

“DBS involves the implantation of electrodes into very specific areas of the brain. When connected to a power unit and to controllers implanted in the chest, the electrodes deliver signals that interfere with the Parkinson’s-induced signals from the brain, reducing or at least temporarily eliminating the quaking, quivering, rigidity and slowness that characterize the disease. The device can be set in so many permutations that it takes weeks or months to program it correctly. Set the voltages too high, and your hands or feet feel electrified; too low, and you need to supplement them with more medication. ‘Just right’ is supposed to feel pretty good.

“The benefit of the procedure lies in its ability to intervene electrically rather than chemically....”

Refining the technology of the new eugenics...giving parents and doctors increased ability to decide which lives are “not worth living”...

Embryo

The test could be offered to more than 100 families a year

“A new embryo test offers couples at risk of serious genetic diseases a greater chance of having an unaffected baby through IVF, UK scientists say.

“The test looks at the whole DNA of a cell rather than focusing on a specific mutation in one gene, making it quicker to identify diseases in embryos.

“The team will tell a Prague fertility conference five couples are expecting healthy babies after the test, and IVF.

“However, some campaigners have questioned the morality of such screening tests, as they inevitably lead to the destruction of some embryos.

“Simone Aspis, from the British Council of Disabled People, said: ‘Who is going to make the decision about who should and should not live? We believe all babies have an equal right to life....’”

“The step involves ‘preimplantation genetic diagnosis,’ in which clinics take sperm and eggs, make embryos in lab dishes, and screen them for genetic flaws. Embryos without flaws are implanted in the mother’s womb. Those with flaws are frozen or discarded.

“The Human Fertilization and Embryology Authority regulates PGD in Britain. Previously, it had approved PGD only to weed out genes that were nearly certain to cause a grave childhood disease or were certain to cause a grave adult disease. Last week, the HFEA stepped across that line. You can now chuck embryos in Britain for diseases that are more treatable, less likely to strike early in life, and less likely ever to occur in the person whom the embryo would become.

“It’s hard to argue with this step. It will spare many families a lot of suffering. But so will the next step down the slope, and the step after that. And there’s no sign of a foothold ahead that will brake our slide....”

Benefits of Stem Cells to Human Patients

For the complete list of adult stem cell therapies that have benefited human patients, link to the “stem cell scoreboard” of Do No Harm: The Coalition of Americans for Research Ethics. Don’t forget to click on “References” at the top of the page to access documentation for the treatments that are listed.

While at the Do No Harm website, please take a few moments to become acquainted with several other important resources by visiting their homepage. Here you will find an enormous amount of news and commentary on both embryonic and adult stem cell research. Their Founding Statement is an outstanding presentation of why “human stem cell research requiring the destruction of human embryos is objectionable on legal, ethical, and scientific grounds.”

The continuing debate about the effects of mercury in vaccines...

Painful Questions of Blame

“It has been nearly 50 years since mothers shouldered the blame for their children’s autism. Yet for many parents, echoes of that painful era remain.

“In the 1950s and ‘60s, the medical community accepted University of Chicago psychoanalyst Bruno Bettelheim’s assessment that ‘refrigerator mothers’—those with a supposedly cold, unloving demeanor—brought on their children’s disorder.

“Although we now know that autism is a neurological disorder and not the result of bad parenting, the exact cause remains a mystery.

“Many parents, however, are convinced they’ve found the answer. And most experts are on the opposing side.

“Indeed, few medical battles are more charged than that between parents who believe mercury in their children’s vaccines brought on autism and the medical establishment that has found no evidence to support that claim.

“Not only do these families feel enormous frustration with the many doctors who dismiss their theories, but they sometimes blame themselves for what happened while also struggling with the terrible stress of caring for an autistic child....”

“The doctor who sparked an international scare over the safety of MMR vaccine is to be charged with serious professional misconduct by the General Medical Council in an attempt by the medical establishment finally to lay the controversy to rest.

“Andrew Wakefield, who published a research paper in 1998 purporting to show a link between the MMR vaccine and autism, is accused in preliminary charges of publishing ‘inadequately founded’ research, failing to obtain ethical committee approval, obtaining funding ‘improperly’ and of subjecting children to ‘unnecessary and invasive investigations’, The Independent has learnt. The research is said to have caused immunisation rates to slump and cases of measles, mumps and rubella to soar. The research, which appeared in The Lancet, is said to have done more damage than anything published in a scientific journal in living memory....”

‘Miracle babies’ in the arms of beaming mothers are great public relations for the IVF industry. And a great money-spinner, too.

“More than a million babies have been born around the world through in vitro fertilisation. Nearly four per cent of all births in Denmark are IVF babies, more than one per cent in the United States. More than half a million embryos live frozen in American IVF clinics.

“Twenty-seven years ago, the only way infertile parents could create a family was through adoption. But in 1978 when British researchers Patrick Steptoe and Robert Edwards discovered the right mix of care and chemicals to nurture human embryos in a Petri dish, a new industry was born—baby manufacture. In the US alone, it is worth at least US$3 billion a year.

“For customers, it hardly seems a business. Whatever it cost them, what they are cuddling is a bundle of joy, the stuff of dreams, their ‘miracle baby’. This is the image that the industry seeks to promote. The websites of IVF clinics feature glowing mothers being treated by beaming white-coated doctors. They have public relations to die for.

“A new book may help to paint a more down-to-earth picture of this highly profitable and under-researched industry. The Baby Business: How Money, Science and Politics Drive the Commerce of Conception gives an account of its development and business dynamics. Its author, Debora L. Spar is a professor at Harvard Business School and a mother of three children herself....”

“About one-fifth of the nation’s organ transplant centers don’t meet federal standards for patient survival or perform the required minimum number of operations annually, according to an analysis by the Los Angeles Times.

“The U.S. Centers for Medicare and Medicaid Services has allowed 48 heart, liver and lung transplant centers to continue operating despite sometimes glaring and repeated lapses, the Times reported Thursday. There are 236 approved centers nationwide....”

The need for fresh transplant organs is pushing us down the slippery slope...

Controversial Organ Donation Method Begins in Canada—Organs Extracted 5 Minutes after Heart Stops

“In a press conference at the Ottawa Hospital today, doctors announced the first-ever non-heart beating organ donation (NHBD) procedure preformed in Canada.

“The procedure, also known as donation after cardiac death (DCD), typically involves a person who requires a ventilator and, although he has measurable brain function, is determined to have no hope of recovery. The doctors then remove ventilation from the patient and wait for the heart to stop beating. If the heart stops for five minutes, death is pronounced and the organs are harvested by another surgical team.

“One of the major ethical problems with the procedure is that there are cases where the heart has recommenced beating and circulation after five minutes of stoppage; another is that the stoppage of the heart is caused by the removal of the ventilator.

“Organ donation by ‘brain death’ remains controversial after 30 years of the procedure being practiced, but DCD is even more controversial since there is very little time left for ethical considerations. While with ‘brain death’ organs can be harvested at leisure since machines keep air flowing into the lungs and blood circulating, with DCD the stoppage of the heart necessitates very quick harvesting as organs deteriorate without blood flow....”

“...Perhaps the most striking dimension of the modern economy is the commerce of the body, including an impressive array of new biotechnologies and biological procedures that promise to improve, control, or manipulate our native biology. In myriad ways, the better body is for sale—from anti-impotence drugs to anti-depressants, from cosmetic surgery to low-carb diets, from baby-making clinics promising you a healthy child to the current push to legalize the buying and selling of human organs. And if one looks ahead to the biotechnologies of the future—improved mood- and memory-altering drugs, stem-cell-based medicine, genetic muscle enhancements, new techniques for controlling the genomes of one’s offspring—it is clear that the commerce of the body will only become more ambitious, selling bodily perfection to anyone with enough disposable income.

“This leaves us to wonder: Is ‘bio-capitalism’ something novel, bringing with it a new spirit and new dilemmas? Or is it simply the continuation of modern capitalism’s promise to ‘better our condition’ indefinitely? No doubt the answer is some combination of continuity and novelty. The interesting question is whether the novel dimensions of bio-capitalism are so fundamental that we need to rethink our moral intuitions about capitalism itself. In a word: Does the new commerce of the body portend a moral crisis for modern capitalism?

“As always, to understand where we are heading, we need to revisit where we came from. From the beginning, the idea of modern capitalism was connected to various notions of the good life, or different assessments of the best life possible for limited, selfish, and imperfect human beings. Morality and modern commerce were always inseparable, and the defense of commerce (like the lament) was originally made in moral terms.

“By morality, I mean living well (both as individuals and as a society) with the permanent questions of being human, including the questions that arise because we are bodily beings with bodies that fail or fail to satisfy: How do I face suffering and death? What are my obligations to my parents and children? Do the religious traditions of my birth still bind me, and how do I regard the piety or impiety of others? What are my obligations to the weak, poor, nasty, and insane? What is the meaning of my sexual desires and erotic longings? Does the noble end I seek—saving a soul, freeing the oppressed, curing the sick—justify a given means to try to achieve it?

“Modern capitalism, at its origins, addressed these moral and existential questions—sometimes directly, sometimes indirectly. It did not spring from a single idea of the human condition or embody a single answer to man’s great questions, but at least three different attitudes toward life and commerce. One is the spirit of God-seeking enterprise embodied in early Protestantism; the second is the irreverent self-love embodied in the likes of Voltaire; and the third is the worldly moderation best articulated by Adam Smith. To be sure, typologies such as this one often distort as much as they clarify; history is messy and complex, and the history of capitalism is winding and tumultuous, with passionate defenders, savage critics, and many unexpected turns. Still, the presence of these three different spirits of capitalism is undeniable, and undeniably important....”

Eric Cohen is the director of the program on Bioethics and American Democracy at the Ethics and Public Policy Center, editor of The New Atlantis, and a senior consultant to the President’s Council on Bioethics. “Biotechnology and the Spirit of Capitalism,” the essay from which this excerpt was taken, was published in the Spring 2006 issue of The New Atlantis and is available online.

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Fact Sheet

Do No Harm

Benefits of Stem Cells to Human Patients

The continuing debate about the effects of mercury in vaccines...

Painful Questions of Blame