Of horcruxes, stem cells, and the quest for immortality: the bioethics of Harry Potter

 

CBHD has partnered with author Austin Boyd and publishing house Zondervan for a suspense-fiction series entitled The Pandora Files. The first installment, Nobody’s Child, is about designer babies, body parts sales, and the thorny ethical issues they engender. It is a laudable effort to use the power of story to get people thinking about important issues; to show us rather than to tell us something is often the better strategy, and highlights the power of all the arts, whether visual, written, or performed, to touch hearts as well as minds.

I recently finished reading with my family one of the more wildly popular contemporary works of fiction, and found many points of contact for thinking about current bioethical issues. I realize that J.K. Rowling did not write the Harry Potter series as a bioethical parable, but the themes in her writing and the values her characters espouse are striking in their applicability.

(Warning: SPOILERS) In the series, an evil wizard named Lord Voldemort is obsessed with power, and with his own mortality. In the effort to overcome death, he resorts to what is the worst of imaginable dark magic: the creation of horcruxes. In order to make a horcrux one must commit murder, and the process causes irreparable damage to one’s own soul.

Harry Potter, a student wizard, is a leader of the resistance to Lord Voldemort. Guided by the Gandalf-esque wizard Dumbledore, he grows into his task over the course of seven very exciting (and very long) books. Dumbledore asserts repeatedly that the primary strength the resistance enjoys resides not in any magical power, but rather in the power of love — not the mushy, romantic sort, but the real thing,  self-sacrificing agape-style love. In fact, Harry goes knowingly to his death in order to defeat Voldemort; then, after a brief post-mortem sojourn in King’s Cross (who could miss that symbolism?) he returns and — well, I won’t spoil the entire story for the three people who haven’t read it or seen the movies.

Even in these novels written ostensibly for children, there are shadows of deeper and darker motifs, parallels to our world. The themes of thirst for power and desire for immortality are all too familiar to us, driving much of the most ethically questionable science. That Voldemort would resort to killing in his quest to live forever should have a familiar ring as well: we just make it sound much more civilized when we say “We disaggregate an embryo in a laboratory dish in order to obtain the stem cells that will be the key to regenerative medicine.” Voldemort does terrible damage to his soul each time he kills to make a horcrux;  who can tell what damage we do to our cultural soul when killing human embryos, our own young, becomes accepted by a large portion of the scientific and public community?

Again, Rowling did not intend to write a bioethical thriller as Austin Boyd is doing. But a person reading her books might just feel a bit more the danger inherent in the quest for power, and sense more keenly the contradiction and, indeed, evil, of killing another in order to benefit oneself. And when practices redolent of those values, such as embryonic stem cell research, are brought up, the reader might remember the words of one of the leaders of the resistance who said, “Every human life is worth the same, and worth saving;” and espouse Dumbledore’s prescription of self-giving love as a potent form of resistance to the evil around us.

From IVF to human trafficking, and how liberal bioethics led the way (actually, it followed)

 

Ross Douthat of The New York Times wrote recently of The Failure of Liberal Bioethics to provide any ethical guidance in the area of reproductive technologies. He recounts how liberal bioethicists, for all their eloquence about monitoring and controlling new reproductive technologies, really just act as a rubber stamp for whatever anybody wants to do, finding reasons “to embrace each new technological leap while promising to resist the next one . . . You can always count on them to worry, often perceptively, about hypothetical evils, potential slips down the bioethical slope.  But they’re either ineffectual or accommodating once an evil actually arrives. Tomorrow, they always say — tomorrow, we’ll draw the line. But tomorrow never comes.”

This marked failure in line-drawing in years past is bearing grim fruit today. In the August 4th New England Journal of Medicine, George Annas wrote of Canadian legal efforts to regulate the international trade in reproductive medicine. In order to bypass local regulations and expenses, people buy sperm from one country, ova harvested from women in another country, and rent a woman to act as a gestational surrogate from a third country, to try to have a child. These are just the sort of practices against which “conservative” bioethicists, those concerned with human dignity, the meaning of procreation, and the commodification of children, have warned; and about which “liberal” bioethicists have opined, “Well, there’s a theoretical risk here, we’ll have to watch that —” and then watched as theory became practice and practice became madness. Annas writes of the fear of many that reproductive medicine is “becoming a branch of international trafficking in women and children.”

This fear is reality. Last winter the Wall Street Journal ran an article featuring PlanetHospital.com LLC, a California company that scours the globe to find the “components” for its “business line” of internationally trafficked reproductive materiel and technology. ”PlanetHospital’s most affordable package, the ‘India bundle,’ buys an egg donor, four embryo transfers into four separate surrogate mothers, room and board for the surrogate, and a car and driver for the parents-to-be when they travel to India to pick up the baby.” The international nature of this enterprise places it under the radar of any governmental regulation that might interfere with the “business line,” and there does not appear to be much internal ethical regulation on the part of the company itself; anything goes, even when an apparent pedophile wants to have a child. As chief executive of PlanetHospital Mr. Rupak says, “Our ethics are agnostic. How do you prevent a pedophile from having a baby? If they’re a pedophile then I will leave that to the U.S. government to decide, not me.”

If liberal bioethicists continue to have their way, the unthinkable practices of today will become the commonplaces of next week. Annas bears disquieting witness to this when he writes of ”acts that were once thought to be so universally condemned that prohibitions against them could be incorporated in an international treaty.  These prohibitions include the knowing creation of a human clone, the creation of an embryo from the cell of a human fetus or from another embryo, the maintenance of an embryo ex utero for more than 14 days after fertilization, the use of sex-selection techniques for a reason other than the diagnosis of a sex-linked disorder, the performance of germline genetic engineering, the use of nonhuman life forms with human gametes, the creation of chimeras for any purpose, and the creation of hybrids for reproduction.”

How many of these “acts that were once thought to be so universally condemned” are already standard procedure today? If liberal bioethics continues to have its way, which of today’s unthinkables will be the next California company’s “business line?”

 

(If you have time, read all three articles.  They are very disturbing. If you think that the work of CBHD is unimportant, you may just change your mind.)

Of Machines and Men (Part II)

 

I observed last week that machines are increasingly shaping the nature of medicine; rather than medicine using its machines, its machines are starting to “use” medicine, to shape and direct the nature of medicine and adapt medical practice to the nature and methods of the machine. In this process, human activity absorbs the ethos and rhythms of the machine. Machines are all about efficiency, standardization, precision, data, and automation. Is this not becoming characteristic of the practice of medicine?

In medicine, “Efficiency” appears to be the watchword and underlying criterion for more and more decisions. The term “industry,” which previously one never would have used in the same sentence as the word “medical,” has become an accurate representation. Interactions between “medical consumers” and “providers” are increasingly mediated through machines. Leaders in medicine strive for standardization, automation, the effacement of individual practice variations, and centralization. Specialization is ever-increasing, and specialists with more techniques and machines to offer are valued more highly (and reimbursed more handsomely) than generalists who are the masters of less technology. Health care workers have reached the point where they can not practice without their gadgets. Practice quality is measured only by what is quantifiable; data, information, seems to have become the primary distinguishing characteristic of medicine, over and above relationship. Medical ethics is being reduced to machine-like process; content has become almost irrelevant. Technology is used more and more in an attempt to eradicate all ambiguity, imprecision, and uncertainty. Technology is used more and more simply because the technology exists. Both physicians and patients feel the increasingly machine-like nature of medical practice, even if they can not express it as such: patients complain of the impersonalization, sterilization, and dehumanization of medicine, while doctors feel more and more like cogs in a machine.

Efficiency is the end-all and be-all of machine medicine;  eliminating inefficient means becomes part of the grand project. And who in our time quibbles with eliminating inefficiency? The problem is compounded when the efficiency value system is applied not just to medicine, but to the humans it was meant to serve, when those patients who are considered “less efficient” are eliminated as blithely as last year’s smartphone. It happens now in the unborn, with prenatal genetic diagnosis identifying those “less efficient” humans who are then prevented from being born; it happens in the older and disabled, with euthanasia and physician-assisted suicide removing those who are too sick or old to be of use to themselves or others. Where will it be applied next?

To remain a human profession, medicine must regain and retain its human ethos . . . which, is why ethics is so central to its practice. In a future post I will consider some ways to resist the usurping of the essence of medicine by the efficient principle of the machine.

 

Doing Drugs for Science

 

There is a place in Chicago where you can be paid to take mind-altering drugs.

In the Human Behavioral Pharmacology Laboratory at the University of Chicago, psychiatry professor Harriet de Wit studies various licit and illicit mind-altering drugs, from caffeine to Ecstasy, by testing their effects on human volunteers. The purpose of the research is to find out how different people react to different drugs, in order to answer the central question of drug abuse research: Why do some people become addicted to drugs when most people who try them do not?

Study subjects must be between the ages of 18 and 35 and have no history of drug abuse, except those volunteers participating in the studies of Ecstasy, who must already have tried the drug.  After the studies are completed, there is no long-term follow-up of volunteers.

The story in which I first read of these studies was on the front page of the August 7th Sunday Chicago Tribune. The studies are approved by two review boards and the national advisory council of the National Institute on Drug Abuse; yet, reading about the research, I felt a bit uneasy. I believe that research done on human subjects is supposed to have at least a potential benefit to the subjects under study. Will the knowledge gained in these studies really have enough of a potential benefit to the subjects to outweigh the risk? According to the story, “studies have shown that experiments like these do not make subjects more likely to use illicit drugs.” But that does not rule out the possibility that someone who takes part in these studies could thus become exposed and addicted to an illegal drug they might otherwise never have encountered. I vividly recall patients describing to me the stories of how they became addicts the first time they took a drug (cocaine and meth are the two I remember in particular), and I can easily imagine that happening in a study such as those described; in fact the story tells of one subject who was given methamphetamine and liked the feeling of the drug: “I felt extra happy . . . I was cheerful and peppy.”

Am I overly cautious?  Am I too obstructionist?  Is the knowledge gained from these studies worth the chance that even one person might, through participation in the study, become addicted to an illegal drug?  In other words, is this ethical human-subject research?

 

Of Machines and Men (Part I)

 

As part of my job, I have the privilege of participating in the delivery of many babies.  I was at one such blessed event earlier this week.  There were several medical personnel and the father standing around the bed of the expectant mother. Due to the wonders of epidural anesthesia, she was quite comfortable, despite the fact that she was in the final stages of labor.

Suddenly I became aware of what all of us were doing — myself, my residents, the nurse, even the father: we were watching a machine. The mother was hooked up to a machine that monitored both the baby’s heart rate and her own contractions. The rest of us stood and stared at the machine. When the machine showed she was having a contraction, we would all turn towards her and encourage her to push, cheerleaders for her and the little life that she was bringing into the world.  But we kept one eye on the machine, and as soon as it indicated the contraction was over, we turned away from the mother and towards the machine again, waiting expectantly for it to tell us when the next contraction was coming.

With a sense of deja vu I realized that I had observed a similar phenomenon in the ICU: doctors, therapists, nurses, even family and visitors who had no idea what the little multi-colored squiggly lines on the monitor meant, nonetheless staring expectantly at the monitor on the wall instead of at the patient in the bed.  And in my training of resident physicians, I have watched videotaped patient encounters showing them sitting in the office with the patient, staring deeply into the computer screen instead of at the patient who has come to see them.  Similarly, in their inpatient work, the residents spend a few minutes on the hospital floor seeing their patients, and the remaining hours of the day (and night) staring into a computer screen, tending to the computerized chart — the “iPatient,” as Abraham Verghese called it here.

The practice of medicine has historically been founded on the physician-patient relationship;  on that foundation has been erected an edifice of techniques and technologies, tools for medical practitioners to use in serving their patients. However, it seems that in our time the tools are beginning to attack the foundation of medicine rather than just being used by it. For a variety of reasons, the tools and technologies increasingly become the center of the physician’s attention. Instead of medical practitioners defining how the tools are used, the tools begin to define what medicine is. We are becoming what Neil Postman called a Technoloply: our tools change and determine our practice’s purpose and meaning, our very way of knowing and thinking and relating to our patients.

 

Edmund Pellegrino once wrote, “Men have always sensed that the more they forged and the more machines they built, the more they were forced to know, to love, and to serve these devices.” (From Humanism and the Physician.)

 

Next week:  Some thoughts on what we can do about the ascendancy of the machine in medicine.

 

The limits of medicine and technology

 

In Too Much to Know, author Ann Blair notes that in our culture, which virtually deifies technology, we believe that we can find technological solutions to all problems, even those that are actually addressable only by attending to ourselves.*

Perhaps this confusion about the proper solution to a problem is part of the crisis in medicine and bioethics. The knee-jerk expectation of the public and the medical enterprise alike is that for every problem people bring before a doctor there can be found a solution, and that a technical solution will be the best. But what if that assumption is incorrect?

What if there are some patients for whom a technical solution is the worse option? Maybe there are some depressed patients for whom the best solution to their problem is not another pill, but the balm of human compassion and the encouragement to use the resources they have at hand to find comfort. Maybe there are some people with terminal diseases for whom the best solution is not every last possible intervention trying to sustain bodily function indefinitely, but rather help in strengthening faith and preparing for death.

Maybe instead of attempting to eliminate disabilities by trying to detect and eliminate fetuses that have them, we should be striving to be a people who can love and cherish those among us with worse disabilities than our own. Maybe instead of seeking absolute certainty (an illusion at best) by demanding that every technological test and scan be made available, we should be learning to live in the freedom of the inevitable uncertainty that comes with life on this planet.

Maybe there are types of human suffering that medicine was never meant to address. Maybe there are problems that we can only address by fixing not the problem, but our selves. And maybe part of the task of bioethics should be seeking the wisdom to discern between the two.

 

*This summary of Blair’s thought is from Alan Jacobs’s review in the May/June 2011 Books & Culture.

The End of Morality

Part 2 of 2

In the grandiosely titled article “The End of Morality,” published in the July/August Discover, Kristin Ohlson writes of brain experiments not unlike those I wrote about yesterday in “Toward a Brain-Based Theory of Beauty.” Researchers placed subjects in functional MRI scanners, gave them moral dilemmas to think about, and mapped the areas of the brain that lit up during the experiment.

The similarities between the two articles end there. Where the studiers of beauty went no further than asserting what could rightfully be asserted, that there was a correlation between perceptions of beauty and certain areas of brain activity, the studiers of morality marched right past correlation into causation:  “You have these gut reactions and they feel authoritative, like the voice of God or your conscience.  But these instincts are not commands from a higher power.  They are just emotions hardwired into the brain as we evolved.”  Where the beauty study interacted with centuries of thinkers and thoughts about beauty, the studiers of morality are ready to discredit “that inner voice we’ve listened to for tens of thousands of years.”

Ohlson and the researchers she quotes seem to fall into the reductionism of believing that the brain is “all there is,” that there is nothing above or behind what happens in the brain that causes it to behave as it does. She writes of “morality . . . as a neurological phenomenon,” of the “underlying biology” and the “biological roots of moral choice,” failing to see that there may be something underlying the underlying biology, something that can’t be measured in a scanner. Joshua Greene, one of the morality researchers, asserts that “There is no single moral faculty; there’s just a dynamic interplay between top-down control processes and automatic emotional control in the brain.”

The hubris is almost breathtaking:  the article’s headline reads, “Neuroscience offers new ways to approach such moral questions, allowing logic to triumph over deep-rooted instinct.”

This type of reductionistic, naturalistic, materialistic, mechanistic thinking, with its implied determinism, conveys a stunted view of humanity that will diminish our perception of human dignity if we allow it. As Christians — indeed, as humans — we must resist falling prey to this sort of selective memory which remembers that we are dust, but forgets that we received life from the breath of God.

 

(Postscript:  In all fairness, the two articles that I described were quite different.  The first was a formal scientific study in a scholarly journal, the second an article written by a freelance writer for a popular magazine that has to sell copy to survive.  This fact does not affect my central point, however, which is that the reductionism embodied in the second article — and in so much of the literature surrounding particular fields of research — is false, prevalent, and will diminish our understanding of human dignity if we follow it.)

Beauty and the Brain

 

Part 1 of 2

A close family member of mine is in a rehab hospital, struggling to overcome a brain injury.  This has naturally led me to reflect again on the nature of our brains, the ineffable complexity of this organ that has the consistency of grape jelly, how our brains are related to who we are as humans, what makes a person a person, free will, and the efforts various scientists, philosophers, and ethicists have made to arrive at a conclusion to these questions.  There is a fascinating body of research related to brain function, some of it disquieting (just as it is disquieting to look into our own souls, it can be so to look into our own brains), much of it disappointingly reductionistic.  Too much of the literature surrounding the research draws unwarranted conclusions from the results of experiments, proclaiming triumphantly that “this shows that what we thought were complex and uniquely human functions really turn out to be just the result of these neurons firing in response to those hormones which evolved in response to such-and-such showing that there’s nothing really special about us after all and that free will is an illusion . . .”  Religious devotion, marital fidelity, sexual preferences, altruism — all of these and more have been explained away by unjustifiably materialistic, reductionistic, and usually evolutionary conclusions drawn from observations of brain function.  In the process, human freedom and dignity are maligned.

When I saw this article entitled “Toward a Brain-Based Theory of Beauty,” I thought for sure that I was in store for more of the same triumphant debunking of something — the ability to appreciate beauty — that is unique to humans.  I was pleasantly surprised to find otherwise.  In the study, participants looked at paintings or listened to musical excerpts while lying in a functional MRI scanner.  They were asked to judge each one as “beautiful,” “indifferent,” or “ugly,” and the parts of their brains that lit up with each response were mapped out.  The researchers found that the same part of the cerebral cortex was activated by the perception of both visual and auditory beauty.  In their discussion, the researchers then actually interacted with some philosophical thought on the subject of beauty, before arriving at the conclusion that “Beauty is, for the greater part, some quality in bodies that correlates with activity in the mOFC [a certain part of the brain] by the intervention of the senses.”

Here, it seems to me, is brain research done aright, brain research which respects human dignity.  There are no wild speculations, no debunking, no assumption that “what we’ve observed is the whole story.”  Instead there is humility (“We emphasize that our theory is tentative”), respect for historical human experience and thought outside of science, and the acknowledgement that there is more to beauty than what can be seen with a functional MRI scanner.  This stands in stark contrast to a recent article from Discover magazine with the grandiose title “The End of Morality,” which we will take a look at tomorrow.

Safe Passage

I came across this description of the duties of a physician, from an 1858 lecture to medical students:  diagnosis, treatment, the relief of symptoms, and the provision of safe passage.

The provision of safe passage struck me as a concept we would do well to rehabilitate.  It is an evocative phrase:  protecting and helping someone on a long voyage.  That is generally not how we are taught to think about death in medical school.  Death is failure!  It is a cliff, a precipice to be avoided, rather than a voyage that everyone ultimately has to make.  We have a tendency to approach the precipice in one of three ways:  most often, we try to keep the dying patient from falling over the edge, wrapping them up and pulling them back  from the brink with ventilator hoses and feeding tubes and intravenous drips and every heroically inappropriate medical intervention and test we can conceive of;  or we realize that there’s nothing we can do, so we abandon them;  or, increasingly, in the name of “compassion,” we push them over the edge with physician-assisted suicide.  What a difference it could make if, instead of treating death as a precipice from which we attempt to keep a patient indefinitely, we understood death as a voyage each person will have to make.  What a difference if, instead of being trained to stave off the inevitable at any cost, doctors were trained to recognize — and to help patients recognize — when the voyage is approaching, how to help patients to prepare for it, and how to help them to make it a “safe passage,” a good death for them and their families.

 

Stop those prying doctors!

 

Florida residents have their saviors in the Florida legislature to thank for shielding them from the insidious “prying into personal lives” that doctors have shamelessly been inflicting upon patients.

Apparently, doctors have been asking their patients questions about whether they own guns, and – prepare yourself for a shock – if the patient answers in the affirmative, some doctors have actually been counseling patients on how to store the guns safely and protect any other people in the home, particularly children, from accidental harm.

Fortunately, some attentive citizens were alerted to this disgusting practice and enlisted the NRA in helping them to get the Florida legislature to pass, and the Florida governor to sign on June 2nd, HB 155, which prohibits physicians from making written or oral inquiries regarding firearms ownership or recording such information in a patient’s chart (unless the doc believes “that this information is relevant to the patient’s medical care or safety, or the safety of others”).

It is a great relief to see that the physician-patient relationship — too long the purview of a suspiciously-dressed clique of highly-trained, dedicated professionals and their trusting patients, too long full of “prying into personal lives” as exemplified by questions like, “How do you feel?” “Does that hurt?”  “What do you use for contraception?” and “Did anybody in your family ever have cancer?” — is at last being exposed and regulated by those people we all trust way more than we do our doctors, the elected representatives in our legislatures.  My only regret is that some of the original provisions of the bill, such as the stipulation that a violation would amount to a third-degree felony punishable by up to five years in prison and a fine as high as $5 million, did not make it into the final legislation.

Encouraged by the NRA’s success, other bodies are stepping up to protect the unsuspecting public from some of the horrifying practices that routinely take place behind the closed doors of the consulting room.  The Tobacco Growers Coalition is promoting legislation to ban doctors from making inquiries about smoking, the GFFFA (Greasy Fried Fast Food Alliance) is working to make it illegal for doctors to counsel their patients about healthy diets, the NARL is drafting laws to ensure that doctors don’t counsel pregnant patients against abortion, and the Colombian drug cartels are looking for ways to prevent doctors from advising patients against using their special brand of products.

Sound too ridiculous to be true?  OK, I made that last paragraph up.  But read this.

Lest anyone misunderstand, this post is not about gun ownership, nor do I have anything against the NRA.  This post is about unwarranted encroachment upon the sanctity of the central economy of the medical profession, the physician-patient relationship;  and about what sort of Rubicon has been crossed when the paranoid intrusion and constraint represented by this bill is placed upon the good will and judgment of a doctor — and enshrined in the law of the land.