Between 1838 and 1852, a dam was built across the South Fork Creek in western Pennsylvania, creating a lake or reservoir about two miles long by a mile wide. In 1879, the dam was bought and repaired by the South Fork Fishing and Hunting Club; they stocked the lake and used it for fishing and sailing. On Memorial Day, 1889, during a heavy rainstorm, the dam burst, sending 20 million tons of water hurtling down the valley, erasing or nearly destroying several towns including Johnstown, and killing some 2209 people.
What does this have to do with bioethics? I just read a terrific book by David McCullough about the disaster entitled The Johnstown Flood, published in 1968. Towards the end of the book, McCullough makes the following pungent observations about the crucial mistakes made by those whose actions or lack of action contributed to the flood:
In the first place, they had tampered drastically with the natural order of things and had done so very badly. . .The point, of course, was not that dams, or any of man’s efforts to alter or improve the world about him, were mistakes in themselves. The point was that if man, for any reason, drastically alters the natural order, setting in motion whole series of chain reactions, then he had better know what he is doing. . .
What is more, the members of the club and most of Johnstown went along on the assumption that the people who were responsible for their safety were behaving responsibly. And this was the second great mistake . . .
. . .the director of the U. S. Geological Survey, Major John Wesley Powell, wrote that the dam had not been “properly related to the natural conditions” and concluded: “Modern industries are handling the forces of nature on a stupendous scale . . . . Woe to the people who trust these powers to the hands of fools.” (pp. 262-3)
We would do well to remember our past. The dams of the eighteenth century are the cloning, chimeras, and cyborgs of the twenty-first; the natural order that we are drastically altering on a stupendous scale is the stuff of biological life itself; and in our headlong rush to alter or improve the human condition, we are setting in motion a whole series of chain reactions that have the potential to affect far more than 2209 souls. And I am not convinced that the researchers responsible for our safety know what they are doing any more than did the members of the South Fork Fishing and Hunting Club.
“Merry Christmas to all, and to all a good night….”
I am mailing it in on the holiday. To do so, I thought I’d encourage readers of this blog to check out at least two other bioethics blogs that may not always be linked in the usual places.
One is Wesley Smith’s “Human Exceptionalism” blog at National Review Online. Posts are reasonably frequent (although none in December 2012), with an emphasis on human dignity concerns (end-of-life, distinguishing human and animal moral status), biotechnology and risks of commoditizing human life, and the implications of the Patient Protection and Affordable Care Act (aka “Obamacare”). Conservative, both socially and politically, as I take conservatism generally to be understood in today’s America.
The other is the “Over 65 Blog” at the Hastings Center website. Organized by Daniel Callahan and colleagues, this blog focuses on reflections by senior citizens on health care, health policy, and generational issues raised by those and by the aging of our population generally. The five stated goals are “a stronger role for seniors, self-determination, more care/less technology, confronting the cost problem, and the economic and family needs of the over-65 generation.” The general perspective is more progressive or at least center-left. Last week brought a really interesting post from Alicia Munnell, a management professor at Boston College, refuting the idea that older people working longer will mean taking jobs from the young.
I think both are thoughtful and authoritative, and welcome respites from the talking-point fiascos of broadcast journalism.
“Woe to you, scribes and Pharisees, hypocrites! For you are like whitewashed tombs, which outwardly appear beautiful, but within are full of dead people’s bones and all uncleanness.”– Matthew 23:27
I received several comments on last week’s post about Hubertus Strughold, so I thought I’d follow up with another post. The fact that Strughold has been well-respected in American medical circles despite his leadership in medical experimentation in Nazi Germany may shed light on deep-seated philosophical problems that undergird America’s healthcare crisis. It is no secret that the Allies marveled at the technological and scientific capabilities of the Germans as they marched through that country in the final days of World War II. Though it used the scientists of the Third Reich to the ultimate success of putting a man on the moon, American medicine may also have adopted harmful philosophical ideas that cripple U.S. medicine to this day. The technological and scientific accomplishments of American medicine may be the whitewash that hides the philosophical problems that are the dead people’s bones that affect patient care and make us incapable of solving systemic healthcare problems.
Several writers on this blog have commented on the failures of the “business model” of medicine. Joe Gibes has written several posts on the subject (see his “Black Friday” post), and Steve Phillips has recently mentioned the “manufacturing efficiency” that has been brought to human reproduction. It is well-known that many Americans sided with the National Socialists in Germany in the 1920s and 30s because they saw them as a bulwark against the tide of communism that seemed to be sweeping over Europe (Russia fell to the Communists in 1917). In the culture wars in America the last two decades, it appears the right-wing has propelled the “business model” of medicine to the fore as a bulwark against the Left’s move to bring government-run healthcare to America. It is a classic case of the end justifies the means. Why Christians allied themselves with the right-wing to form the “Religious Right” in the 1980s I’ll never know. But it looks like a deal with the Devil.
In our last post we noted that Baylor’s Technology and Human Flourishing conference underscored the need for, as we put it, a “robust theology of technology.” We thought we’d follow up with some reflections on what such a theology might look like.
In chapter three of their book entitled Bioethics: A Christian Approach in a Pluralistic Age,Scott B. Rae and Paul M. Cox develop a helpful framework for thinking about “Medical Technology in Theological Perspective.” The following is a very brief synopsis of their discussion.
The starting point for thinking about medical technology in theological perspective is the creation narrative as recorded in Genesis 1 and 2—specifically, with what has been termed the “dominion mandate” and with the doctrines of general revelation and common grace. At the creation humankind was charged with a mandate to “subdue the earth and be its master” (p. 94). The fulfillment of this task was, however, complicated by the entrance of sin into the world. Consequently, the post-Fall mandate includes “working toward improving the creation, or reversing the effects of the entrance of sin” into the created order, a significant aspect of which is dealing with death and disease (p. 95). Importantly, the dominion mandate is constrained by our role as stewards of rather than masters over creation: “At creation, human beings were charged with both dominion and stewardship. Creation was theirs to use for their benefit, but it ultimately belonged to God and they were responsible to him for its proper care” (p. 95).
According to the doctrine of general revelation, God provides both the “natural resources” and the “human ingenuity and wisdom” requisite for human beings to fulfill the dominion mandate (pp. 95-96). The doctrine of common grace affirms the notion that “God’s grace… is bestowed commonly, or on all humankind, irrespective of one’s membership in the community of God’s people” (p. 97). (Consider, for example, the rain that God sends, which falls on the “just” and the “unjust” alike; cf. Acts 14:17.)
Taken together, God’s general revelation and common grace provide human beings with “the knowledge and skill that are necessary to develop the kinds of technologies that enable humankind to subdue the creation” (p. 97). This is no less true of medical technology than of other forms of technology.
Crucially, however, medical technology can achieve only a “partial and temporary” victory over death and disease—it can never conquer them entirely. Moreover, given the sinful nature of humanity, technology can be put both to good and evil uses, in service of both virtuous and vicious ends (pp. 98-99). Consequently, “[w]e must distinguish between the use of any particular medical technology per se and its intended or actual use in practice. That is, it is possible to see virtually any medical technology as a part of God’s common grace to humankind. But that does not exempt it from moral assessment of its uses” (p. 99).
Engaging in such “moral assessment” of technology—whether medical technology specifically or other forms of technology more generally—was one of the key tasks to which Baylor’s IFL conference was devoted.
In this vein, I (Cody) sensed that most of the attendees were wrestling honestly with how to use technology wisely and still be authentic in their Christian faith. On several occasions people mentioned the desire to avoid a “Luddite” dismissal of technology altogether, as if separating from electronic gadgets offered a particular kind of spiritual purity. Most understood that spiritual health is essentially a matter of the heart, and the external aspect of using technology may or may not indicate the status of the soul. Instead, many Christians opt for a view of technology that stresses the fact that we use technology and technology should not “use” us. When technology is no longer useful or, even worse, when it begins to sets us back or harm us as Christian people, we lay it aside. Or as the Reformers might have put it, “Let us do all Soli Deo Gloria, For the Glory of God Alone.”
We’d like to close with a brief note about the notion of “virtual” technology. A number of the speakers at the IFL conference dealt with this issue, from discussions of how a child’s involvement with outdoors activities or handicrafts can improve ADHD symptoms to the importance of the local gathering of believers as the body of Christ in church worship. These ideas emphasize the importance of place, “being there” if you will. As Kay Toombs mentioned in her talk, we can relay information about a spouse’s illness to many people via a Facebook status update, but this is very different from sharing this information in the presence of someone who can hold our hand. And this is very directly related to our being ensouled beings, not just cerebral beings that communicate data but spiritual people who are there, in a particular place. It’s nice that we are able to share with you some of this information over the Internet, but it might be even better if you can now go and discuss some of these heart-felt issues with a friend over a cup of coffee.
We invite further reflection on these topics from our readers.
I was honored to have Trinity colleague Chris Ralston come to Texas and join me for Technology and Human Flourishing, a conference of the Institute for Faith and Learning at my alma mater, Baylor University. We thought we’d give a quick run-down of some of the ideas presented.
On October 25-27, 2012, scholars, undergraduate and graduate students, faculty, and other interested individuals from across the globe gathered at Baylor University in Waco, Texas to discuss issues surrounding the relationship between technology and human flourishing. The conference featured a variety of individual paper presentations and plenary speakers, ranging across a broad spectrum of topics, from “Building Emotions into Machines” to “Interstellar Exploration and Human Flourishing.”
Many of the presentations engaged with a number of common themes, including the relationship between science and faith; epistemological questions about the sources of knowledge, in particular the question of whether or not science exhausts the domain of “knowledge”; and questions about the impact, for better or for worse, of technology on human dignity and flourishing. Some of the specific questions raised include the following: How does technology encourage us to think about ourselves? About human nature? As our capacities to manipulate the physical “stuff” of our bodily existence (DNA, genes, etc.) expand, will this encourage us increasingly to think of ourselves strictly in physicalist terms? Should we think of ourselves in such terms? And what would be the implications or consequences of so thinking about ourselves?
In addressing these and other related questions, one recurrent thought that emerged is the notion that technology should be assessed not only in terms of what it can do (what can be done with it), but also in terms of how it affects us as human beings, both individually and collectively. That is, how does technology and its various applications shape us, whether as individuals or as society? In this regard, the conference highlighted the need for a deep, robust theology of technology—one that avoids the twin dangers of Luddite rejection of technology on the one hand, and a naïve acceptance of “all things new” on the other. The challenge is to remain open to the potential blessings of technological development, while at the same time resisting what has been termed the “technological imperative”: the assumption that if it can be done, it should be done.
Ian Hutchison, a nuclear engineer at MIT, provided some excellent comments on scientism, much of it coming from his new book Monopolizing Knowledge. Hutchinson is an ardent proponent of the natural sciences, for they have been quite literally his “bread and butter” for many years. However, he made the argument that we are greatly mistaken if we think that scientific tools give us all there is to know about the universe.
At dinner, we had the honor of sitting at the same table with Dr. Hutchinson and one of my former philosophy professors, Dr. Kay Toombs, whose research and commentary on the experience of illness over the years I highly recommend. Dr. Hutchinson had concluded his lecture with a word about the counter-cultural nature of being a Christian and how simply re-discovering virtues about the wrongness of covetousness would be of great help. I made the comment over our salads that is seems strange that speaking against covetousness is thought of as a new idea, for in fact it used to a part of Preaching 101. He agreed that his ideas weren’t all that revolutionary but that we need to have the faithfulness to pursue them even in the face of opposition.
It seems fitting to have more than one MIT professor at a technology conference, and Rosalind Picard of the MIT Media Lab followed well in the footsteps of Dr. Hutchison. In the first place, her research bringing affective (emotional) components to computing and robotics is just plain fascinating, but its application to helping autistic adolescents is heart-warming as well. One could sense from her talk that she is a kind, Christian woman and that she brings a warmth and a Christian ethic to a field that is oftentimes cold circuitry.
For all you Kierkegaard fans out there, the IFL while be recognizing the bicentennial of his birth next year with a conference that includes Richard Bauckham in the line-up, and the 2014 conference on faith and film also promises to be worth the trip as well.
A surprising number of people come to me as their physician and want me to fix the fact that they are getting old. I have always been curious about what lies behind people’s reaction to their own aging. Is it fear? Shame? Self-delusion? For whatever reason, some people spend thousands of dollars trying to hide the bodily evidence of the passing years. Maybe we think that if we erase the physical signs of aging, we can change the fact of aging. Maybe it’s our fear of our mortality; since aging forces us to look mortality in its wrinkled visage, we use surgical and chemical coverups as a way to to hide from our fears. Many people are ashamed of their age, almost as if living long were somehow a moral shortcoming! Maybe aging represents the shrinking of dreams and opportunities, and if we pretend that we’re not aging we feel we can escape those narrowing walls.
Autumn invariably gets me reflecting upon the passage of time. This autumn, an event occurred that really brought time and aging home for me: my 25th college class reunion. It was a wonderful time with wonderful people. But when we all gathered together for a class picture, I looked around and thought, “Wow, do we look mature!” (Why do we use euphemisms for the word old ?) Suddenly, I felt a little pang of mourning for all those fresh college student faces, mine included, filled with expectation and untold opportunity. Suddenly I understood a little of what those who fear aging must feel.
An awful lot of money goes towards something called “anti-aging medicine.” By that term, some mean treating the things that tend to occur to our bodies as they experience years of wear and tear: arthritis, heart disease, osteoporosis, and the like. But others mean something quite different by the term: the slowing or elimination of the aging process altogether, and thus the prolonging of the life span. This is supposedly accomplished through the use of unproven supplements and hormone therapies (“quackery”), and in the promised future through stem-cell therapy and nanotechnology . The former version of anti-aging medicine is compatible with one of the legitimate aims of medicine, helping people to age well. The latter is, in the short term, a way for the unscrupulous to make money off of expensive, proprietary “anti-aging” supplements and formulas; in the long term, it is the exploiting of modernity’s insatiable hunger for control and humanity’s deep-rooted fear of mortality to hold out false hopes of eternal life: hopes for which people are willing to shell out untold amounts of money to more or less trustworthy authorities, but which can only be finally fulfilled by one Person.
We live in an age of technological medicine in which we have diagnostic testing available to us that would have seemed unbelievable 50 years ago. Much of that testing is beneficial. Some of the testing has a risk of physical harm and must be used only when justified by the situation. Much of it is very expensive and we need to avoid the cost of unnecessary use. Because of its many benefits we generally consider the information we obtain by doing medical testing to be a positive thing and sometimes assume it is always beneficial. We have a sense that we can never have too much information on which to make decisions about our health.
However, there are times when the information that we get from doing medical tests may be harmful. We need to realize that the potential harm from the information provided by the test is one of the risks of testing that we need to consider before doing a test. This was pointed out recently in a study done by Barbara Bernhardt et. al. about the experiences of women who received abnormal results of prenatal chromosomal microarray testing in an experimental study. The study was recently prepublished online by Genetics in Medicine and referenced in a recent article in U.S. News and World Report. The women agreed to the testing because it was being provided free to patients in a research study, but those who were found to have abnormal results found themselves in a position of having information that the fetus they were carrying had a chromosomal abnormality that was potentially serious, but how much their baby would be affected by that was not known. That left some of them wishing they had not had the testing done. The researchers labeled this situation “toxic knowledge” in which the information from the testing turned out to be seen by the women as more harmful than helpful.
This issue was also a part of the recent decision by the U.S. Preventive Services Task Force to recommend against screening for prostate cancer with PSA testing. Part of the decision was due to a lack of evidence of benefit from PSA testing, but it was significantly influenced by their understanding that the information that a screening test for cancer is abnormal leads to further testing and a confirmation of cancer leads to treatment even if there is no evidence that the treatment is helpful. Therefore the information that a screening test is abnormal can lead to more harm from further testing and the adverse effects of possibly unnecessary treatment than the questionable benefit of the testing.
While the medical tests that are available to us can provide very important information for our health, we need to remember that even the information we obtain from testing can be harmful and make wise decisions about the tests we do as well as the treatments we consider. We most commonly think of informed consent being needed when decisions are made about treatment that entails significant risk, but it can also be needed in the decision to do medical tests.
Implantable cardioverter-defibrillators (ICDs) are like the automatic external defibrillators (AEDs) that you see everywhere these days. They deliver a shock to a heart in a lethal rhythm in order to try to restore the heart to a normal rhythm. Unlike AEDs, however, ICDs are implanted directly on a patient’s heart, are constantly monitoring it, and automatically deliver life-saving shocks whenever needed. The statistics are quite clear for patients with symptomatic heart failure in certain conditions: ICDs prevent mortality from sudden cardiac death (SCD), and are the sole effective therapy for prevention and treatment of lethal heart rhythms. And in a recent study in the Archives of Internal Medicine, more than half of doctors were so convinced by the statistical mortality benefit of ICDs that they valued the statistics more than patient preferences in making decisions about ICD placement.
On the one hand, this could be a good thing: here are a bunch of doctors who want to do what is best for their patients (the principle of beneficence). And if there were no downsides to ICDs, maybe it would be less problematic. But for many patients, the tradeoff for decreased mortality from SCD is dying instead from progressively increasing symptoms of heart failure. There are perfectly reasonable patients who, given the choice between the increased chance of a sudden death and the increased chance of a protracted death from heart failure, would choose the former (exercising the principle of autonomy); but if physicians are so enchanted by their gizmos and their ability to postpone mortality that they don’t elicit patients’ preferences — or don’t inform them of the options — then a lot of patients may be getting procedures that they would not want if they knew the full risks and benefits.
Medical technique and technology have come in the last century to wield great power. That power must be exercised with the utmost care, and with the utmost respect for persons and their inherent dignity. Our love for gizmos and all things high-tech blinds us to the fact that all techniques and technologies have unintended and unforeseen side effects. And our love for empirical, statistical data blinds us to the fact that statistics tell us exactly nothing about the person in front of us. Careful exercise of medical power requires that medical practitioners treat their patients not as part of a statistical herd but as individuals, eliciting their individual values and preferences. In many instances in modern American medicine, autonomy has been elevated too highly and led to questionable practices or to medical practitioners abdicating their duties as moral decision-makers; but the remedy for runaway autonomy does not lie in a return to a paternalism in which a doctor makes all of the decisions for a passive patient.
Researchers have now developed a technique for doing genetic testing of a fetus by using cells circulating in maternal blood, avoiding the more invasive and dangerous technique of amniocentesis. These new technical capabilities hail the dawn of a new age of eugenics, or the pursuit of “good (eu) genes.” With these new technical achievements, physicians can gain knowledge of the child’s genetic makeup as early as 7 weeks after conception. This can mean a new opportunity for interventions earlier in the pregnancy for the sake of the health of the child or it may provide doctors with more information to inform a decision to abort the child.
Arthur Caplan helped develop guidelines for organ transplants in the 1980s and has for some time pressed for similar oversight of the “wild west” of reproductive medicine, largely because of its eugenics implications. He is very aware that genetic testing could be used for selecting athletic ability, eye color, or gender. Sex selection using abortion is already something practiced in countries like India and China, and genetic testing using maternal blood would only make it easier. However, Caplan is firmly pro-choice, saying that there are good and bad reasons for an abortion. As Caplan puts it,“Sexism is not a good reason for ending a pregnancy.”
What is missing in this discussion is our response to those with diseases and abnormalities. To many, a chromosomal defect like Down Syndrome or a physical abnormality like malformed limbs is a good reason for ending a pregnancy. Too often our attitude to those with abnormalities and diseases is to consider them as unfortunate mistakes rather than opportunities to live in fellowship with another human being. We think getting rid of the mistake solves the problem, especially when it involves fetal tissue out of our line of sight. If our drive for perfection bumps into human autonomy, we back off. If it does not, we proceed in getting rid of the patient if we can’t get rid of the disease. This is a serious misunderstanding of the ethos of medicine. An improvement in our ethical strategies will not come from a new set of protocols to use in the clinic. It will only come about if physicians adopt a new value system concerning the purpose of medicine and develop their character accordingly.
Henri Nouwen, well-known for living in the L’Arche community for adults with disabilities, articulated a vision of such an ethic when he said, “When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.”
Click here for a video of Art Caplan discussing gender selection.
This month’s issue of Sexuality, Reproduction & Menopause, the journal of the American Society for Reproductive Medicine (ASRM), carries an article entitled “’Last-chance kids’: A good deal for older parents – but what about the children?” The article discusses the growing number of older, post-menopausal women giving birth through assisted reproductive technology (ART), and gives a thoughtful analysis of the ethical points surrounding the use of assisted reproduction in women past childbearing age.
As my clinical ethics professor always said, good ethics begins with good facts. The authors of the article provide good, pertinent facts: data not just on life expectancy at various ages, but – just as important when considering the energy needed for parenting – actuarial data on how many of those years are likely to be spent in good or excellent health. (Should we use ART to give a child to a woman who statistically has very little chance of staying healthy enough to raise the child through high school?)
The article continues by asking, “Is reproduction a right?” Remarkably, instead of invoking the free-for-all autonomy that plagues attempts at ethical analysis of reproductive rights, the authors quote an ASRM Ethics Committee’s report that “Reproductive rights protected under the United States and state constitutions are rights against state interference, not rights to have physicians or the state provide requested services … It is also important to recognize that constitutional rights to reproduce are, like all rights, not absolute and they can be restricted or limited for good cause.” Refreshing, to say the least.
The authors continue with a surprisingly candid evaluation of the consequences for the children of these older parents. They conclude with strong cautions about the use of of ART in the elderly which, while falling short of prohibiting the practice, nonetheless give the overzealous practitioner of such techniques reason to pause and consider.
I can understand why a woman might desire to have a child in her older years. However, the inability to conceive a child in one’s 6th or 7th decade of life can hardly be regarded as a disease, and I cannot see any compelling reason why medical technology should be used to treat it. As Dr. R. Landau wrote, “Childlessness is a complex concept, and children are neither medicine nor therapy. They should not be used as means to other people’s ends.” (Quoted in the linked article.)