Living in the Biotech Century -- May 18, 2006

“Teen smoking and drinking continued to drop, but teenage abuse of prescription drugs has become ‘an entrenched behavior’ that many parents fail to recognize, a survey released Tuesday showed.

“For a third straight year, the Partnership for a Drug-Free America study showed that about 1 in 5 teens have tried prescription drug painkillers such as Vicodin or OxyContin to get high—about 4.5 million teens. It also indicated that many teens feel experimenting with prescription drugs is safer than illegal highs.

“Forty percent said prescription medicines were ‘much safer’ than illegal drugs, while 31 percent said there was ‘nothing wrong’ with using prescription drugs ‘once in a while.’ The study further found that 29 percent of teens believe prescription pain relievers are non-addictive.

“‘It’s really a case now of accepting the fact that it’s here,’ Partnership President and CEO Steve Pasierb said. ‘Clearly, this is a true problem in American society....’”

“British regulators yesterday ruled that fertility clinics may screen out human embryos carrying genes that raise the risk of cancer in adulthood—a move the government said could prevent future suffering but that others said was proof that the age of handpicked, ‘designer’ babies is at hand.

“The Human Fertilisation and Embryology Authority, which oversees tests involving human embryos in Britain, had previously allowed the use of genetic tests only to eliminate ‘test tube’ embryos bearing genes for fatal childhood diseases.

“The new decision expands that policy to include some genes that significantly increase the odds—but do not guarantee—that a person will get cancer. The policy also for the first time includes diseases—primarily breast, ovarian and colon cancer—that do not strike until adulthood and often respond to treatment.

“Similar embryo screening tests have been used in the United States for years. But because they are not regulated or tracked, no one knows how often they are performed or the full range of conditions being screened for....”

If there was a chance you carried a gene linked to cancer, would you take a test to find out?

“Gene testing—medical analysis to detect alterations in a person’s DNA or chromosomes—has been around for a while. It allows people to detect everything from infertility causes to cancer risks.

“Now the Internet is allowing consumers direct access to genetic testing—if they want it. Nearly a dozen direct-to-consumer gene testing companies are giving people the ability to send a blood sample or a swab of saliva to a lab to learn about their genetic predisposition for diseases like ovarian cancer.

“‘Knowledge is power,’ said Ryan Phelan, founder and CEO of DNAdirect, an Internet-based gene-testing and counseling service, which launched in March 2005. ‘Genetics is the next tool out there for consumers.’

“DNAdirect, a privately held company in San Francisco, sells tests for diseases that Phelan said could have therapeutic possibilities, like a predictive genetic test to determine the likelihood of developing breast cancer.

“Genetic testing has mushroomed in the last decade. There are now genetic tests for more than 900 diseases, according to the Genetics and Public Policy Center at Johns Hopkins University, and several hundred more are coming.

“But critics say the medical profession hasn’t kept pace with science. Most practicing physicians don’t know much about genetic testing, and experts on the subject are hard to find....”

“To use...human [embryonic] stem cells in research, one must first receive a license from the Wisconsin Alumni Research Foundation...”

Does legal ownership of genes, stem cells and other biological material go beyond the pale?

ANITA L. ARAMBULA and K.C. ALFRED / Union-Tribune

“In October 1976, an Alaska pipeline engineer named John Moore became seriously, mysteriously ill. Eventually, he found himself at the UCLA Medical Center, where he was diagnosed with a rare, progressive form of blood cancer called hairy cell leukemia.

To slow the disease and perhaps save his life, Moore’s physician—Dr. David Golde—recommended removing Moore’s spleen. The surgery was successful. Moore recovered and eventually returned to Alaska, with instructions to visit Golde for annual checkups.

“Over the next eight years, Moore did so. During each visit, Golde would extract samples of Moore’s blood, skin, bone marrow and sperm. When Moore complained about the cost and hassle of the visits, he was told the UCLA visits were necessary and could be performed only under Golde’s direction.

“That was true, but not in the sense Moore initially presumed. Golde had discovered that Moore’s diseased spleen had been overproducing lymphokines – a key chemical constituent of the body’s immune system. The doctor and colleagues were using blood and tissue samples taken from Moore to develop a cell culture that produced lymphokines, which could then be marketed to companies working on cancer treatments and drugs.

“Moore knew nothing of this research until 1984, when he was finally asked to sign a consent form and waive all rights to any product that might be developed from his cells. Moore refused and hired an attorney to investigate....”

Cancer Dad Joins Fight Against Euthanasia Bill Saying: ‘I’m glad that I decided to live’

“Doctors have launched a new battle against euthanasia ahead of a crucial vote in parliament, arguing that seriously ill patients who beg to end their lives often go on to change their minds. Peers will vote on Friday on a private member’s bill that would allow a terminally ill adult to ask a doctor to help them die, so long as they were judged to be suffering unbearably.

“Doctors opposed to what is termed physician-assisted suicide argue it would lead to pressure on vulnerable people not to be a burden to their carers, and they are rallying patients who have suffered serious degenerative illness in support of their argument.

“David Williams, 51, a father of three from Cardiff, is backing the campaign. He was a 35-year-old successful service manager for a car dealership when he began suffering severe back pain, and was eventually diagnosed with a tumour on the spine. Williams was told he would be in a wheelchair by 37 and most likely dead by the time he was 40. He had surgery just as his third child was born....

“Williams has another reason to be glad he is alive. A few years after his recovery, his wife contracted liver cancer and died suddenly. Had he opted for suicide, he points out, his children would have been orphaned....”

A peek inside the British House of Lords as they debate and reject physician assisted suicide...

Euthanasia Bill: The Religious and the Righteous Unite in a Moral Crusade

“The occupants of the chamber known as God’s Waiting Room remained polite, persuasive and precise as they sank the latest attempt to introduce a right for people to choose when to die.

“In a debate that showed both the vigour and innate conservatism of the House of Lords, it was a Friday like no other. The chamber is normally deserted at the end of the week, especially one with the summer’s first Test match under way, but yesterday there was a buzz about the busy red benches, and the public gallery overflowed around the narrow galleries.

“Three noble baronesses in motorised wheelchairs positioned themselves at the front of the cross benches to oppose the Assisted Dying for the Terminally Ill Bill.

“They were in league with a dozen archbishops and bishops in full black and white vestments who crammed on to the two small benches of the Lords Spiritual near the Sovereign’s throne....

“Yet rather than relying on Scripture, the Bill’s detractors emphasised that a ‘slippery slope’ would follow legal permission for a tiny number of terminally ill people to opt for an assisted suicide....”

Dr. Sabih Aburegiaba, with his daughter, Debbie Linehan, and his son, Adam Regiaba, had been desperate for a lung transplant. (Courtesy of Dr. Suchetana Mukhopadhyay)

“In the antiseptic prose of medical journals, he was ‘the lung recipient,’ she ‘the liver recipient.’

“In real life, they were two desperately ill people who received transplants last August from the same organ donor, a brain-dead accident victim. Thanks to the surgery, they had a second chance at life. Or so it seemed.

“For two weeks they fared well, he at the University of Pittsburgh and she at New York University Medical Center. But then, suddenly, they began to run fevers, deteriorate mentally and struggle for breath. Seizures and paralysis followed, and they sank into comas.

“Tests found the West Nile virus. Both patients had been infected by the donor, whose blood was tested only after the recipients got sick. Two other patients received his kidneys, but remained well. The disease took its worst possible course in the liver and lung recipients, causing encephalitis, a brain infection. When the cases were first reported in October, both were still in comas. Doctors tried an experimental treatment, a serum made from the blood of people who had developed immunity to West Nile, but it did not help....”

“Higher mortality rates for patients in geographic regions with the most intense health care...”

“The amount of money Medicare spends on chronically ill patients varies substantially from state to state, with nearly $40,000 spent per patient in New Jersey and the District of Columbia, but less than $24,000 spent in states such as Indiana and West Virginia.

“Yet, there is no indication that patients in the states with the highest spending are better off than those in states with the lowest spending. In fact, the reverse seems to be true, according to researchers at Dartmouth Medical School.

“Their findings, released in a report Tuesday, could have important policy implications as the nation struggles with the soaring expense of its Medicare program.

“‘We must fundamentally redesign the way we care for chronically ill Americans,’ said the authors of the report. ‘We must reward, rather than penalize provider organizations that successfully reduce excessive care and develop broader strategies for managing patients with chronic illness....’”

A state that allows doctors to help some patients kill themselves is worried that an increasing number of seniors are killing themselves without help...

Oregon ranks No. 4 for states with the highest rates of suicide among senior citizens

“Every year for at least the past decade, about 100 Oregonians aged 65 and older have killed themselves—enough to place the state well above the nation’s elder suicide rate and fourth among states, all in the West, with the highest rates.

“In Oregon and across the nation, suicide rates are highest among older adults—especially older men—and escalate sharply after age 65. But Oregon, for reasons that are not altogether clear, follows only Nevada, Wyoming and Alaska in 2003 for having high concentrations of suicide among its most senior citizens. The suicide in question is not the doctor-assisted variety.

“Oregon officials, anticipating the wave of baby boomers approaching their vulnerable years, on Monday responded with an effort to hold down the suicide rate. Their plan, two years in the making, outlines ways groups can work together to promote awareness of suicide’s danger to older citizens.

“Dr. Mel Kohn, Oregon state epidemiologist, said a key element of the plan is to educate doctors and nurses to recognize symptoms of depression and explore patients’ risk for suicide....”

“Although the public worries about abuses of genetic power and about who will control the controllers, I believe its deepest concerns lie elsewhere. What does and should worry us most can, and probably will, arise even with the free, humane, and so-called enlightened use of these technologies. For, truth to tell, genetic technology, the practices it will engender, and (above all) the scientific teachings about human life on which it rests and which it seems to validate are not, as many would have it, simply morally and humanly neutral. They are pregnant with their own moral meaning, regardless of whether they are practiced humanely or taught humbly. They necessarily bring with themselves changes in our practices, institutions, norms, beliefs, and human self-conception. It is these challenges to our dignity and humanity that most urgently generate the concerns over genetic (and other biomedical and neuropsychological) science and technology....

“Curiously, the worry about dehumanization is sometimes expressed, paradoxically, in the fear of superhumanization, that is, that man, or rather some men, will be ‘playing God.’ This complaint is too facilely dismissed by scientists and others who are nonbelievers. The concern has meaning, God or no God. By this phrase is meant one or more of the following: (1) Man, or, again, some men, are becoming creators of life, and indeed, of individual living human beings (in vitro fertilization, cloning); (2) they not only create life, but they stand in judgment of each being’s worthiness to live or die—not on moral grounds, as is said of God’s judgment, but on somatic and genetic ones (genetic screening and abortion); and (3) they also hold out the promise of salvation from our genetic sins and defects (gene therapy and genetic engineering). Man, not God, is a god to man.

“Never mind the exaggeration in the conceit and the fact that man, even at his most powerful, is capable only of playing at being God. Consider only that, if scientists are seen in the godlike role of creator-judge-savior, the rest of us must stand in inferior relation to them as creatures-judged-tainted. These worries, despite the hyperbolic speech, are not far-fetched.

“One example will suffice. Not long ago, in my own institution, a physician making rounds with medical students stood over the bed of an intelligent, otherwise normal ten-year-old boy with spina bifida. ‘Were he to have been conceived today,’ the physician casually informed his entourage, ‘he would have been aborted.’ Determining who shall live and who shall die—on the basis of genetic merit—is a godlike power already wielded by genetic medicine. And this power will only grow....”

“Triumph or Tragedy: The Moral Meaning of Genetic Technology,” by Leon R. Kass, was published as an appendix to Information and Biological Revolutions: Global Governance Challenges, edited by Francis Fukuyama and Caroline S. Wagner. This report was published in 2000 by the RAND Corporation and is available online or may ordered in hard copy.

Leon R. Kass, M.D., Ph.D., is the Addie Clark Harding Professor in the Committee on Social Thought and the College at the University of Chicago, as well as Hertog Fellow in Social Thought at the American Enterprise Institute. He was chairman of the President’s Council on Bioethics from 2001 to 2005.

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