MITPressLog

Anatomical Alternatives

On March 23, 1983, Barney Clark, the world's first recipient of a permanent artificial heart, died only 112 days after his surgery. In Case Studies in Biomedical Research Ethics, Timothy Murphy examines this controversial case and raises questions about the ethics surrounding new medical interventions.

 

Barney Clark was born in 1921 and, after a lifetime of smoking, was diagnosed in 1978 with emphysema, congestive heart failure, and cardiomyopathy (degeneration of heart tissue). Heart transplantation was relatively new at that time, and Clark at 57 was considered too old to be eligible for the surgery.

A medical committee at the University of Utah was interested in finding a candidate to be the first person to receive an artificial heart, the Jarvik-7 (named after its designer). This committee thought that the candidate should be so ill that death was imminent and the prognosis offered no more than a year of life. Clark met these conditions.

Clark signed an eleven-page consent form, he was interviewed by members of the IRB about his choice, and a team of physicians tried to test his determination by urging him to change his mind. He did not.

Dr. William DeVries led the medical team that supervised the implantation of the artificial heart in a complicated surgery that began at 11 P.M. December 1, 1982. The Jarvik-7 was a mechanical device that was hooked by tubes to an external air compressor to move blood. The external compressor weighed 375 pounds, and Clark could never be without it. After the operation, Clark was in poor state and experienced considerable confusion, delirium, memory loss, periods of semiconsciousness, and seizures. He required surgical intervention to replace one of the heart valves which broke two weeks after the initial operation.

Clark’s health was never especially good, but he did appear before videocameras, and selectively edited videos were released to the media. This public visibility gave the impression that he was glad to be alive. In fact, Clark’s overall condition could only be called burdensome, and he died on March 23, 1983, of multiple organ failure. It was not long before scientists were split in their opinion about the value of the artificial heart. Some called it one of the boldest experiments ever attempted. Others said it more than failed. Still others called in unacceptably expensive. DeVries defended the artificial heart noting that, without it, Clark would have been dead by midnight on December 1, 1982.

The FDA, which oversees medical devices, allowed DeVries three more tries with the Jarvik-7. The first of these patients died after surviving for twenty-one months; the second survived for ten months and two days; the third survived ten days. In the last case, DeVries admitted that the surgery had probably shortened the patient’s life. In 1990 the FDA withdrew approval for use of the Jarvik-7 as a permanent device, or even as a bridge for a patient awaiting a human heart transplant. Patient referrals to DeVries dropped, because other physicians were concerned that he had too many conflicts of interest rooted in his desire for success and financial gain. They worried that he was putting technical success ahead of patient care.

Murphy closes this examination by leaving readers with the following three questions:

1. To what extent is it ethical for a health care team to offer a patient an intervention that might possibly extend his life and then try and persuade him to not accept it?
   
   
2. What information do you think would be crucial in explaining the risks and benefits of an artificial heart transplant?
   
   
3. It is reasonable to expect some failure with new medical interventions. In your view, do the survival times of the patients in this case amount to a reason to shut down the use of a mechanical heart, or should more attempts be allowed?

 

Watson and Crick and Genetic Twists of Fate

On February 28, 1953, James D. Watson and Frances Crick announced their discovery of DNA's chemical structure. To celebrate the anniversary of this breakthrough, here's an excerpt from Genetic Twists of Fate by Stanley Fields and Mark Johnston. The book explains how tiny variations in our personal DNA can determine how we look, how we behave, how we get sick, and how we get well.

 

More than half a century ago, on February 28, 1953, James D. Watson and his colleague, Francis Crick, launched an age of genetic discovery with their announcement to the lunchtime patrons of the Eagle Pub in Cambridge, England, that they had “found the secret of life.” Their discovery of the structure of DNA—the most important molecule of life, which specifies the form and function of every living thing—made clear how traits are passed down through the generations. Watson and Crick’s breakthrough paved the way for an age of discovery that culminated in the announcement on June 25, 2000—not in a pub but at the White House—that the human DNA code had been determined. A few years later, Watson himself became one of the first two people to read his own personal DNA code.

After 1953, Watson went on to a celebrated career, directing a laboratory at Harvard University, then a storied scientific institution at Cold Spring  Harbor on Long Island, and ultimately the Human Genome Project, which deciphered the DNA code. But shortly before his own DNA code was determined, Watson’s professional life ended amid charges of racism. He was quoted in the October 14, 2007 edition of The Sunday Times that he was “inherently gloomy about the prospect of Africa” because “all our social policies are based on the fact that their intelligence is the same as ours—whereas all the testing says not really.” He also said, “There is no firm reason to anticipate that the intellectual capacities of peoples geographically separated in their evolution should prove to have evolved identically. Our wanting to reserve equal powers of reason as some universal heritage of humanity will not be enough to make it so.”

As his comments rapidly circled the globe, drawing condemnation from his fellow scientists, the 1962 Nobel Laureate quickly apologized for them. Speaking at a meeting of the Royal Society in London on October 18, 2007, he said, “To all those who have drawn the inference from my words that Africa, as a continent, is somehow genetically inferior, I can only apologize unreservedly…That is not what I meant. More importantly, there is no scientific basis for such a belief.”...

Watson had steered into the always-dangerous shoals of the genetics of race, and he should not have been surprised that his words sank him. In our penultimate chapter we, too, venture into these treacherous waters. We will show you that there are many more genetic differences within racially defined populations such as Africans and Caucasians than between these populations. You can see the close resemblance of the DNA codes of these races if you compare the few available sequences. Or, you can wait a few years and see it when you read your entire DNA code.

 

Fish-Inspired Vehicles?

Happy Monday! Here's an excerpt from How to Catch a Robot Rat by Agnès Guillot and Jean-Arcady Meyer to kick off the week.

Forms

Forms present in nature have mathematical properties that have inspired inventors.

In 1420, appearing before the eminent committee that questioned his competence to construct the cupola of Santa Maria del Fiore in Florence, Filippo Brunelleschi rapped an egg on the table and crushed the shell lightly at the base. Everyone could see that the egg remained vertical and immobile, whereas if the architect had tried to explain in words the planned construction, to do it would have seemed impossible. This egg presented in Florentine style (later used by Christopher Columbus) must have been convincing because Brunelleschi obtained carte blanche, and the gigantic dome that he built is still in place. He conceived it (by coincidence?) according to a principle that recalls the eggshell, so that bricks laid fishbone style mutually block each other and thus totally bypass the need for classic supports such as wooden arches. An ingenious encasing of two cupolas likewise ensures a good distribution of pressure.

An egg obviously does not contain arches, which would obstruct the embryo in development, yet its structure is capable of resisting considerable force: the shell of a hen's egg is 0.3 millimeters thick and can withstand up to 3.0 kilograms of pressure, and that of an ostrich egg is ten times thicker and can withstand a pressure twenty times stronger! The shells expoloit a "trick": the crystals of the mineral salts that constitute them are oriented toward the center of the egg and are self-blocking, like the bricks in the dome of Florence. Various architects--including the Germans Frei Otto, Carl Zeiss, and Heinz Isler--have recently adopted these characteristics to calculate the exact thickness needed to cover various domes or to establish force lines for immense stretched structures.

The oblong form is known to move rapidly in the air and in water without too much effort. Bizarrely, marine animals are also the best models for terrestrial or aerial mobiles! For example, the engineers of Daimler AG are currently trying out the form of the tropical boxfish to save precious liters of fuel in future automobiles. This research has resulted in a prototype presented in Washington in 2005. Although the animal presents an almost cubic belly, this characteristic makes it paradoxically very hydrodynamic and even, according to measurements undertaken by engineers, more aerodynamic than current cars, with a coefficient of air penetration of 0.06 instead of 0.30!  The "Mercedes-Benz bionic car" would boast a coefficient of 0.19 and could save 20 percent in fuel and 80 percent in nitrous oxide emissions. Its body, like the rigid carapace of the fish, is conceived as if it were composed of numerous hexagonal panels supported by a metallic vertebral column. Such a car would thus be very competitive in both lightness and robustness, the two great principles of both nature and the automobile industry.

Even an airplane of the future might be shaped like a fish, too. The Smartfish, being developed by several international companies and research laboratories at the initiative of Swiss engineer Koni Schafroth, is inspired by the form of several fish, especially the tuna, the fastest and most agile animal in the sea. A meterwide miniprototype has already successfully achieved first flight, in April 2007...

Two Nobels Among Us

Elizabeth H. Blackburn, University of California at San Francisco, Carol W. Greider of Johns Hopkins and Jack W. Szostak, Howard Hughes Medical Institute won the 2009 Nobel Prize in physiology or medicine for discovering a key mechanism in the genetic operations of cells, an insight that has inspired new lines of research into cancer.

MIT Press boasts the recent paperback reissue of the compelling biography, Elizabeth Blackburn and the Story of Telomeres.  University of San Francisco author Catherine Brady tells the story of Elizabeth Blackburn's life and work and the emergence of a new field of scientific research on the specialized ends of chromosomes and the telomerase enzyme that extends them.  In honor of the occasion, here's a brief excerpt from the book looking at the young and highly motivated Blackburn: 

Like many other seventeen-year-old girls in 1965, Elizabeth Blackburn listened to the records of the Beatles and Peter, Paul, and Mary and wore the miniskirts that were just coming into fashion, but she felt so shy in the presence of boys that she could not look them in the eye. Rigorously schooled by her mother in polite manners that sidestepped confrontation, Elizabeth was a model student who seemed readily guided by her teachers. But her delight in books exceeded the bounds of obedient studiousness—in particular, she was thrilled by her recent discovery of a biology text complete with detailed illustrations of amino acids, strung together in long chains and then folded up into complex three-dimensional shapes to form enzymes and other proteins. For Liz, these elegant structures had a teasing beauty, promising tantalizing clues to the processes of life and yet also enfolding that mystery. Even the names of the amino acids—phenylalanine, leucine—struck her as poetic. Though she confessed her fascination to no one, she traced drawings of amino acids on large, thin sheets of white paper and then tacked them up on her bedroom wall.

From the start she carefully protected the passion that would shape her life as a scientist, her fierce determination often masked by a polite, acquiescent demeanor. The nice girl who remained silent when confronted or thwarted purchased the freedom of a secret, willful, essential self. Blackburn’s first clear memory dates to when she was about three years old. Playing in the yard behind her family’s house, she had found a bull ant and was handling it gently, talking to it as it crisscrossed her palm and the back of her hand. When her mother came on the scene, she brushed the insect from Liz’s hand and vehemently warned her never to touch these insects, whose bite could result in a painful welt. Surprised by her mother’s concern, Liz obeyed. But she remained stubbornly and silently certain that the ant could not hurt her.

We'd also like to tip our hat to Jack Szostak, who is a contributor to Protocells: Bridging Nonliving and Living Matter, and Carol Greider. 

Ashley’s Rights

Norman Cantor, author of Making Medical Decisions for the Profoundly Mentally Disabled, comments on the recent debate over the medical treatment of a 9-year-old girl named Ashley who is severely mentally and physically disabled:

Some disability rights advocates say that Ashley’s medical intervention violates “basic human  rights.”   I disagree.  I argue (in Making Medical Decisions for the Profoundly Mentally Disabled, MIT Press, 2005) that every profoundly mentally incapacitated person has a right to have decisions about potentially beneficial medical interventions made by a conscientious surrogate acting with careful attention to the incapacitated person’s interests, well being, and dignity.  Bodily integrity is normally part of human dignity, but there are circumstances when bodily invasions are justified by the patient’s own interests.  For example, a therapeutic sterilization can be appropriate for a person whose bodily condition means that pregnancy and/or child birth would be torturous.  The surrogate’s decision must be free of negative stereotypes and must include consideration of alternative ways, other than bodily intervention, to promote the person’s well being.

Ashley’s case seems to fulfill the criteria for humane treatment.   Her parents have always been devoted to Ashley’s well being.  They have consulted with medical experts and with a 40 person ethics committee.  They have had considerable input from parents of similar children indicating that normal bodily development will result in a significantly diminished quality of life for Ashley.  If, as claimed, Ashley could not enjoy the normal benefits of physical maturation, and if there are no less intrusive alternatives, her parents’ decisions about medical intervention do not violate Ashley’s rights.

Read the New York Times article about Ashley.
Read about the debate that Ashley’s case has generated.

Scholarpedia

Wikipedia is useful for finding quick information, answering trivia questions, and for getting up to speed on things you think you should know.  But whether Wikipedia ought to be used for an academic citation is another story. 
One scholar, Eugene M. Izhikevich (author of Dynamical Systems in Neuroscience), has decided to harness the concept of Wikipedia into a format that is more likely to please academics:  he has founded Scholarpedia, a peer-reviewed version of Wikipedia.  Each article in Scholarpedia has a "curator", usually a leading researcher or scholar in that field.  The initial version of an article is submitted for a peer review process, and each successive version is permanently saved for purposes of citation.  While (in the spirit of a Wiki) anyone can propose changes to an article, the curator is responsible for approving these changes. 
Scholarpedia's current content focuses on Computational Neuroscience, Dynamical Systems and Computational Intelligence, but it plans to move in other directions if all goes well. 
An exciting aspect of Scholarpedia is that some articles are written and curated by the very people who discovered the concept - as in the case of Lotfi Zadeh, who has written about Fuzzy Logic, or Mandlebrot, who is slated to write the article on Mandelbrot sets.   And who can argue with that kind of citation?

What are you waiting for?

If you've ever wondered what keeps you listening to music, you may have the answers in the book Sweet Anticipation by David Huron.  Huron proposes that your sense of expectation plays a large role in music, and he outlines a range of aesthetic responses that are created by expectation.  If you'd like to hear a bit more about this interesting theory, it is discusssed in a podcast on a new website devoted to music cognition (Sound and Mind).  To listen, click here.  You can also read more new ideas about our brain's appreciation for music in this Boston Globe article.

AIDS—25 Years Later

Twenty-five years ago, the first official medical report by the Centers for Disease Control and Prevention of a mysterious sickness afflicting gay men—AIDS—was published.    While we certainly know more about the virus now than we did in 1986, the search for a vaccine for this deadly disease has been disappointing and researchers say that many of the vaccines that are currently being tested are unlikely to protect fully from infection.  Today, an estimated 38.6 million people are living with HIV, the virus that causes AIDS, around the world. Gregg Bordowitz, an artist, writer, and activist, has spent much of his time trying to capture the AIDS crisis, both globally and in his own life, through video, art, and writing.  Here, Bordowitz looks at the early days of the AIDS crisis and how he first came to understand it:

None of my friends knew much about AIDS in 1986.  I was still living in a mostly straight-identified scene, and AIDS was a remote concern.  But then the reports about the AIDS crisis that began to dominate the news captured my attention, probably because I realized that I could have become exposed to HIV from sex with any number of men—some friends, some acquaintances, some strangers.  Even among my few homosexual friends there was much confusion, misinformation, and denial when it came to safe sex.  The public sex culture of gay life that had achieved visibility and legitimacy through the sexual revolution was being driven underground by homophobia.  In the mid-eighties, mandatory testing and quarantine were discussed at very high levels of the Reagan administration.

Underlying all this confusion was the fear that one could test positive and die a horrible death very quickly.  This fear, magnified by all the attention AIDS was getting in the news, drove me to seek advise and information.  The only hospitable place to go was the Lesbian and Gay Community Services Center on Thirteenth Street, between Seventh and Eighth Avenues.  I became acquainted with the center through my work protesting the 1986 Supreme Court ruling (Bowers v. Hardwick) that upheld state sodomy laws.  Harwick reinvigorated the gay-rights movement, as hundreds of people turned out for marches and demonstrations in New York.  I videotaped these protests—my fledgling efforts as an activist documentarian.  This activity led me to form more friendships with gay men and lesbians. 

The community center was a somewhat run-down old building four or five stories high.  In the warm weather, there were always people hanging out outside, smoking and talking.  The inside badly needed a paint job.  The stained surfaces of the walls were peeling.  It was a labyrinth of different-sized rooms, rooms within rooms, a couple of staircases.  For me, it all added to the allure of the place.  Clearly the imperative to provide shelter for gay men and lesbians, to foster an affirming culture, was more important that appearances.  A sign on an easel just inside the main entrance listed dozens of meetings, consciousness-raising and discussion groups of all kinds concerning communities within the larger community—leather men, men of all colors together, the Salsa Soul Sisters, Alcoholics Anonymous, poetry readings, and so on. 

The Community Health Project was on the second floor.  Climbing the red staircase put me in mind of fire drills at my elementary school.  At the CHP, I was given a free examination and much-needed sex education, all dispensed without judgment.  The health care workers on staff didn’t know me, but I could tell they’d helped many people like me.  The experience was profound, a revelation: community is the space claimed and defended by people who need one another.  On the steps of the center that day, I decide to become a citizen of the gay community, and I vowed to make a contribution to it. 

This essay, "My Postmodernism," was first published in Artforum in 2003.  To read more of this essay and Bordowitz's other writings, check out The AIDS Crisis is Ridiculous. 

Biological Theory

We are pleased to announce the publication of the first issue of our newest journal, Biological Theory: Integrating Development, Evolution, and Cognition.  The journal is devoted to theoretical advances in the biological and cognitive sciences with an emphasis on the conceptual integration afforded by evolutionary and developmental approaches. Edited by Werner Callebaut, Biological Theory grew out of the Vienna Series in Theoretical Biology and is published in partnership with the Konrad Lorenz Institute for Evolution and Cognition Research (KLI). 

Take a look at the whole inagural issue. 

The Globalization of Biotechnology

frontwheeldrive (the name connotes a pulling, forward motion) is a fantastic website that brings intelligent reporting and critical commentary to the fringes of emerging sciences and culture. Recently, frontwheeldrive editor Roy Christopher talked with Georgia Tech’s Eugene Thacker about his recent book, The Global Genome: Biotechnology, Politics and Culture and his unique research which focuses on the intersection of technology and biology—specifically the human genome and the digital computer.   Here’s a bit from the interview.

I wonder if you could expound on your closing thoughts in The Global Genome regarding pop culture being the site in which to understand biotechnology.

Well part of that is due to may background in cultural theory, and, I’ll admit, my affinity for SF and horror. But in all my writing on biotech and the life sciences I’ve always tried to refuse any hard and fast distinction between science and science fiction as a way of understanding the different ways in which futures are extrapolated from a given present situation.

It’s pretty obvious, if one looks around, that the life sciences and biotechnology have pervaded popular culture. A great way of demonstrating this is to look at all of the re-makes of Cold War-era science fiction and comics: Spider-Man, Hulk, X-Men, Fantastic Four, etc. It seems to now be a requirement to somehow put genetics in the stories, even if it really doesn’t make any sense (which is often). I’m less interested in what the director ‘intended’ to mean by this than what it means culturally that genetics, biotech, and even nanotech are always found in SF. One thing it means is that these sciences and technologies are normalized in a way that the general public going to a film will ‘accept’ their inclusion as a matter of course. Certainly there are always SF-geeks who dispute the technical accuracy of how the genetic mutation actually creates the superhero or villain, but on a general level these technosciences have become a part of a certain cultural imaginary. So the question is ‘what conditions had to be in place such that these particular technosciences could become normalized as a part of a certain world-view?’ Perhaps this process is somewhat parallel to the normalization of medicine and public health practices themselves.

So I think that popular culture is relevant, not because I believe that films should educate and moralize, but because there is actually a great deal of ambivalence in pop culture’s treatment of technoscience. We can’t live without it, and yet it seems to be our downfall. The movies that moralize about the ineradicable human spirit do so using the most advanced computer graphics and special effects. There’s also a sense in many of these films, books, and comics, that we as a culture are not quite sure what to do with all of this information and all these gadgets. It’s almost as if the greatest challenge posed to SF now is finding something interesting to do with all the technology that exists.

Read the rest of the interview here.  And, for frontwheeldrive’s take on another aspect of humans merging with machines,  check out their review of Bruce Sterling’s Shaping Things.