Living in the Biotech Century -- February 19, 2005

Sarah Scantlin (left, with her mother Betsy Scantlin) has regained speech and memories after a 20-year absence. Larry W. Smith, AP

“For 20 years, Sarah Scantlin has been mostly oblivious to the world around her — the victim of a drunken driver who struck her down as she walked to her car. Today, after a remarkable recovery, she can talk again.

“Scantlin’s father knows she will never fully recover, but her newfound ability to speak and her returning memories have given him his daughter back. For years, she could only blink her eyes — one blink for ‘no,’ two blinks for ‘yes’ — to respond to questions that no one knew for sure she understood.

“‘I am astonished how primal communication is. It is a key element of humanity,’ Jim Scantlin said, blinking back tears.

“Sarah Scantlin was an 18-year-old college freshman on Sept. 22, 1984, when she was hit by a drunk driver as she walked to her car after celebrating with friends at a teen club. That week, she had been hired at an upscale clothing store and won a spot on the drill team at Hutchinson Community College.

“After two decades of silence, she began talking last month. Doctors are not sure why. On Saturday, Scantlin’s parents hosted an open house at her nursing home to introduce her to friends, family members and reporters.

“A week ago, her parents got a call from Jennifer Trammell, a licensed nurse at the Golden Plains Health Care Center. She asked Betsy Scantlin if she was sitting down, told her someone wanted to talk to her and switched the phone to speaker mode:

Signs of Awareness Seen in Brain-Injured Patients

“Thousands of brain-damaged people who are treated as if they are almost completely unaware may in fact hear and register what is going on around them but be unable to respond, a new brain-imaging study suggests.

“The findings, if repeated in follow-up experiments, could have sweeping implications for how to care best for these patients. Some experts said the study, which appeared yesterday [Feb. 7] in the journal Neurology, could also have consequences for legal cases in which parties dispute the mental state of an unresponsive patient.

“The research showed that the brain-imaging technology, magnetic resonance imaging, can be a powerful tool to help doctors and family members determine whether a person has lost all awareness or is still somewhat mentally engaged, experts said.

“‘This study gave me goose bumps, because it shows this possibility of this profound isolation, that these people are there, that they’ve been there all along, even though we’ve been treating them as if they’re not,’ said Dr. Joseph Fins, chief of the medical ethics division of New York Presbyterian Hospital-Weill Cornell Medical Center. Dr. Fins was not involved in the study but collaborates with its authors on other projects.

“Other experts warned that the new research was more suggestive than conclusive, and that it did not mean that unresponsive people with brain damage were more likely to recover or that treatment was yet possible.

“But they said the study did open a window on a world that has been neglected by medical inquiry. ‘This is an extremely important work, for that reason alone,’ said Dr. James Bernat, a professor of neurology at Dartmouth….”

An abstract of the report, “fMRI reveals large-scale network activation in minimally conscious patients,” is available online (Neurology 2005; 64:514-523). The complete paper is available to non-subscribers of Neurology for a fee.

For the incurable…euthanasia…

Hospital Plans to Remove Patient from Life Support Despite Daughter’s Wishes

“Massachusetts General Hospital said it will take a 79-year-old woman off life support next week—against the wishes of her daughter—and this time a judge has declined to block the move.

“Barbara Howe has advanced-stage amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, an incurable and degenerative muscle condition. She has been in a hospital bed on a ventilator since 1997. She cannot speak and can barely move, but remains mentally alert, says her daughter, Carol Carvitt.

“‘Her face lights up when you talk to her,’ Carvitt said. ‘I visit her four times a week, and my sister visits her every single day. You can see the eye move back and forth and her mouth starts moving.’

“The hospital went to court last year to get permission to remove Howe from life support, but probate court Judge John M. Smoot ruled in Carvitt’s favor, barring the hospital from disconnecting her. But the judge also advised Carvitt to consider what was in her mother’s best interest, not what she believed her mother would want….”

A lesson, perhaps, for the docs who make decisions about their patients’ “quality of life”…

Health and Happiness Aren’t Always Linked

“In a study described in The Journal of Experimental Psychology, a group of people with end-stage kidney failure were provided with electronic devices that prompted them to record their moods at various times throughout the day. For comparison, a group of healthy volunteers used the same devices.

“When researchers tabulated the results, they found that the levels of happiness were about the same for the two groups.

“The researchers, led by Dr. Jason Riis of Princeton when he was a graduate student at the University of Michigan, also found that the healthy people greatly overestimated how unhappy the sick ones would be. And the sick people overestimated how happy healthy ones would be….”

Dolly Expert is to Clone Embryos

The creator of Dolly the sheep has been granted a licence to clone human embryos for medical research.

"Our aim will be to generate stem cells purely for research purposes." Professor Wilmut

“Professor Ian Wilmut and Kings College London scientists will clone early stage embryos to study motor neurone disease (MND).

“This is the second time the Human Fertilisation and Embryology Authority has given such permission.

“Critics maintain that testing human embryos is immoral. Others question the potential benefits of the work.

“Professor Wilmut said it will mean MND can be studied in unprecedented detail.

“Therapeutic cloning for research has been legal in the UK since 2001 and it would be only the second time the authority has given consent.

“The professor’s team was the first to apply for a therapeutic cloning licence in the country.

“Up until now, scientists have wanted to create cloned embryos to see if they can be grown into tissues to repair damaged body parts.

“But Professor Wilmut’s proposal is different as he does not plan to grow healthy replacement tissue.

“Instead he aims to deliberately clone embryos that have MND from patients who have the condition.

“Professor Wilmut, of the Roslin Institute in Edinburgh, says cells from the embryos can be used to study how the disease progresses in very close detail.

“He also said the cells can be used to try out new drugs to see if they stop the disease from progressing….”

Judge Says Lost Embryo A Human

“An aspiring mother’s fertilized egg mistakenly discarded by a fertility clinic was legally a ‘human being,’ a Cook County judge ruled Friday, clearing the way for a Chicago couple to file a wrongful-death suit.

“If the judge’s ruling stands, experts said, it could frustrate the work of fertility clinics and the future of stem-cell research. But attorneys who disagree on the question of when life begins said the ruling likely would be overturned.

“‘As an anti-abortion activist, I was pleased to see the judge’s initiative,’ said Victor Rosenblum, a professor at the Northwestern University School of Law. ‘But as a lawyer, I can’t say that he is on solid ground in his reasoning.’

“The would-be parents, Alison Miller and Todd Parrish, were having trouble conceiving and turned to the Center for Human Reproduction in January 2000.

“After a successful treatment, the married couple believed their fertilized egg—or blastocyst—would be preserved by the Chicago clinic for later implantation.

“But when the couple was ready to conceive that June and asked for access to their fertilized egg, they learned it had not been put in frozen storage, but was mistakenly discarded….”

Using food to deal with other problems…

Eating Disorders Rising Among Older Women

“Twenty-year-old Lacey Hanson, like most college women, takes her looks seriously. She’s concerned about what people think of her. Growing up, her concerns grew into an unhealthy obsession.

“‘It started as a simple diet to lose a few pounds and it just became out of control,’ says Hanson.

“Hanson became anorexic—starving herself in high school. At one point, this high-achieving, straight ‘A’ student was more than 30 pounds underweight.

“‘I was the typical teenager and yet I was slowly killing myself,’ she says.

“Ten million Americans, mostly girls, have an eating disorder. Experts say it’s a struggle compounded by media images that glorify the super thin. And now, Web sites that endorse eating disorders are contributing to the problem. These sites encourage girls to eat as little as possible, even offering advice on how to disguise what they deny is a disease and instead call a lifestyle choice.

“Some of the Web sites have been shut down by Internet providers after health groups protested, but many continue to thrive.

“‘It’s extremely dangerous and reckless, I believe, to try and portray it as something you can mess around with,’ says Dr. Johanna Marie McShane, who specializes in treating eating disorders at her private practice in LaFayette, Calif.

“Eating disorders have long been associated with teenage girls. But now doctors report that a growing number of older women are developing them or have hidden these problems for years….”

Getting rid of the needle…

Special Delivery

A tiny patch (top) is backed by silicone micro-needles (above, in an enlarged view) that deliver drugs through the skin. The micro-needles are too small to see unaided -- or feel when they pierce the skin. (Georgia Institute Of Technology)

“Medicine may heal, but sometimes taking it hurts. Or causes unpleasant side effects. Or just plain tastes terrible.

“This is not a minor concern—especially if you’re a patient who has to take several pills a day, or a child who needs daily insulin injections, or a patient who suffers so badly from fear of needles that you haven’t visited a dentist or a doctor for years.

“Many patients who find the means of taking medicine—what scientists call ‘the delivery system’—too painful or off-putting skip doses, or give up taking their medication altogether.

“The dream of solving that problem has inventors toying with everything from skin patches to microchips as possible ways to take drugs for, say, pain, heart disease, diabetes or cancer. More than 100 U.S. pharmaceutical and biotech companies have joined the race, according to Elisa Perez, a market research analyst for Frost and Sullivan, a San Antonio-based health care consulting company. It’s no secret why. ‘Total revenues [for new and emerging methods] are anticipated to reach $42 billion in 2007,’ Perez said….”

Another stem cell slight-of-hand…the detached cell would have to become an embryo in order to produce embryonic stem cells…

Stem-Cell Method May Cheat Death

“A reproductive research team in Chicago could have an answer to the ethical and scientific conundrums presented by the pursuit of stem-cell treatments.

“That’s no small task considering it’s a question the top minds in science and bioethics have been racking their brains to solve. Scientists at the Reproductive Genetics Institute, or RGI, believe they can derive high-quality embryonic stem cells from an early embryo without killing it.

“The approach would involve removing one cell from a very early embryo that has developed to about eight cells (called a morula), and deriving stem cells from that single cell. The embryo would still have the potential to develop into a human if implanted into a womb. The only thing preventing the scientists from trying the process is money, said Dr. Yury Verlinsky, director of RGI.

“‘No problem,’ Verlinsky said of the technical challenge. ‘I need funding. If you give me funding, I will be doing this.’

“Verlinsky said he can’t be certain the technique will engender embryonic stem cells, but the prospect has greater potential than more complicated proposals recently presented by other scientists to the President’s Council on Bioethics.

“He and his colleagues at RGI have become experts at a technique called pre-implantation diagnosis, which helps reproduction specialists during in vitro fertilization identify embryos that are most likely to grow into healthy babies. They take one cell, called a blastomere, from the embryo—which is not damaged by the process—and test the cell for genetic markers. The researchers say they might be able to expand that single cell into an embryonic stem-cell line.

“Verlinsky and his colleagues recently published the first evidence of embryonic stem cells derived from morulae in the Dec. 6 issue of Reproductive BioMedicine Online. In this experiment, which led to eight stem-cell lines (they self-replicate indefinitely), the morulae were destroyed. But because a morula contains just eight cells, it’s not hard to imagine one cell being sufficient to derive a stem-cell line….”

Ideology…factors into biotech controversies. While science writers and media editorialists are eager to claim, for example, that religious fervor and/or political conservatism primarily motivate critics of human cloning…what often goes unreported is the strong, endemic bias of the pro-research lobby: a pervasive “scientism.”

In the newest definition of the term, “scientism” is a philosophy or a belief system in which scientific inquiry is seen as much more than a dispassionate way of gaining knowledge about the natural world and discovering physical laws. Rather, unfettered science is seen as the fount of earthly salvation. Or, to put it another way, the means and manner of our pursuit of knowledge are removed from any moral context, and the quest itself—a morally neutral undertaking—becomes its own purpose and meaning. Moreover, just as religious beliefs do in fact motivate some critics of the biotech exploitation of human life, an equally passionate secular fervor impels some of its supporters. Seeing the universe through a materialist prism, disdaining faith of any kind except their own, loudly proclaiming that religious values have no place in debates over public policy, these enthusiasts embrace science as the ultimate liberator of humankind from “superstition in all its forms, and especially in the form of religious belief.”

This quasi worship of—rather than respect for—science can easily corrupt its proper pursuit. The fact is that in recent years science has, to a disturbing degree, become political. Although some blame this development on those who have raised alarums about potential abuses of biotech, the latter are far from being solely responsible. In growing measure, scientists themselves have become fervent policy advocates, disguised as impartial investigators….

…I have come to believe that the debate over stem cells, human cloning, genetic engineering and other controversial avenues of research is, at its core, about far more than biotechnology. I believer that we are in the midst of an epochal struggle whose outcome will determine our moral priorities. At stake is whether a Promethean science for science’s sake will trump all other considerations, including long-established beliefs about right and wrong; or whether the scientific enterprise will serve us with humility, and with the understanding that morality can never be jettisoned—most particularly when one is manipulating the building blocks of human life.

A Consumer’s Guide to a Brave New World, by Wesley J. Smith (Encounter Books, 2004), pp. xiii – xiv.

A Consumer’s Guide to a Brave New World is available for purchase at www.humanitas.org.

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After 20 Years of Silence, Brain-Damaged Woman Begins Talking

Signs of Awareness Seen in Brain-Injured Patients

For the incurable…euthanasia…