When I get ready to go out for a social event, I sometimes ask my wife to look over what I am wearing. I ask, “Should I change anything?” Often she replies, “No, you should change everything.” I had a similar experience reading Paul Scherz’s new book, The Ethics of Precision Medicine: The Problems of Prevention in Healthcare. To be clear, it was not the book that needed to change; it was me, and thankfully I did.
Precision medicine is a form of preventative medicine which uses personalized information, such as genetic testing, to minimize risk of disease. My hazy understanding of precision medicine was coupled with an entirely positive stance toward it. I figured if we could understand our individualized risk for various diseases, then we could proactively minimize the probability of illness. As Benjamin Franklin said, “An ounce of prevention is worth a pound of cure.” What could go wrong with precision medicine? Well, as Scherz shows, a lot.
The economist Thomas Sowell noted, “There are no solutions. There are only trade-offs.” This is a lesson that The Ethics of Precision Medicine calls to our attention. Every intervention has costs, if only opportunity costs. The costs of precision medicine, once invisible to me, were made manifest by Scherz’s book.
Preventative medicine can have at least three costs. First, once risks are identified for the patient, the patient may begin to suffer from the anxiety of risk which compounds the current culture’s fixation on danger. Second, a focus on population risk can undermine the relationship between an individual doctor and the individual patient. Finally, precision medicine prompts incentives for surveillance and control of individuals from insurance companies and governments eager to drive down the costs of healthcare. While not ignoring the possible benefits of precision medicine, Scherz for the most part focuses our attention on the often-hidden costs.
Like Caesar’s Gaul, I divide my considerations of The Ethics of Precision Medicine into three parts: a definition of health, body-self dualism, and cost-benefit analysis.
There are great risks in trying to minimize all risks.
Here is the definition of “health” from the World Health Organization, which is mentioned but not endorsed in The Ethics of Precision Medicine: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” I believe the medical art is not properly understood as aiming at health in this broad sense, and Scherz is right not to endorse it. Although it might contribute to someone’s state of complete physical, mental, and social well-being, it is not the duty of a doctor to dole out sound advice about defending arm bars in jiu jitsu, playing Christmas songs on the piano, or finding the best forest walks in Seattle.
So, if the World Health Organization’s definition fails, what other definitions could we consider? Scherz writes, “Health is an absence: it is an absence of negative bodily experiences, since when a person is healthy, there are no dissonances or pains that draw his attention.” The phenomenological experience of disease is indeed often accompanied with negative bodily experiences. But could there be some cases, however, in which an individual has an absence of negative bodily experiences but also lacks health? Take, for example, a person in a minimally conscious state on a morphine drip. That individual may not be aware of any negative bodily experiences, but yet may still be about to die from cancer. On the other hand, an individual might have negative bodily experiences subjectively, but also have (at least in a physical sense) no absence of health. Take, for example, a hypochondriac who is convinced he is dying tomorrow, but may not have anything at all physically wrong with his body.
I worry, and I suspect Scherz worries also, that an excessively subjective understanding of “health” may lead to a view of medicine which transforms doctors into medical PEZ dispensers totally subjected to the preferences of patients, however ill advised or immoral. So, what is a definition of health as the aim of medicine that avoids these implications? The theologian Germain Grisez offers this Aristotelian definition of health: “Health is the aspect of well-being that is common to human beings and other animals: functioning well as integrated, psychosomatic wholes.” The job of healthcare is to foster “health” understood in this objective sense, not total well-being as proposed by the World Health Organization or merely lack of subjective discontentment. Now, onto body-self dualism.
Scherz rightly rejects the Gnostic approach to the body in which “the body is seen as ultimately alien to the self.” But, at times, the book seems to speak in ways that could be interpreted as endorsing body-self dualism. Here are some examples: “The body is one’s tool for engaging in the world. . . . The body ceases to be a predictable medium for acting in the world. . . . [Someone] feeling at home in his body . . .” Scherz is, no doubt, talking about the phenomenological experience of one’s body, but a reader unalert to the dangers of body-self dualism may miss this meaning.
Since Scherz rejects the Gnostic approach to the body, it would seem that he is also committed to rejecting body-self dualism. A rejection of body-self dualism would lead to the conclusion that my body is not my tool for engaging in the world; my body is myself engaging in the world. My body isn’t a medium for acting in the world; my body is me acting in the world. I am not in my body; I am my body. Pope St. John Paul II put the point as follows: “The human body is not just an instrument or item of property, but shares in the individual’s value as a human being.”
Finally, a word about cost-benefit analysis. The book rightly argues that “conflicts over risk are not resolvable through cost/benefit analysis.” Scherz points out that the research about risk isn’t entirely reliable and cost comparisons are complicated by the choice of other values. The latter point is forcefully argued by Alasdair MacIntyre in his essay “Utilitarianism and Cost-Benefit Analysis.” Scherz and MacIntyre are right that the cost-benefit analysis of utilitarianism is not enough.
Rather than blindly seek to maximize “efficiency,” Scherz recognizes the value in “slow medicine” which “may run against many contemporary social values, such as cost-effectiveness, auditability, autonomy, and scalability. They contain risk of abuse. Moreover, they require certain kinds of people as staff. For these reasons, they are not an easy policy solution.” But society should make a place to allow for the benefits of slow medicine anyway.
As an example of slow medicine, Scherz highlights Mercy House, run by a Franciscan order of Ugandan nuns. They serve individuals with care and love, but don’t seek to maximize the measures of safety in ways addressed by fast medicine on a large scale. Optimization of what is most efficient and lowest risk sometimes undermines personalized care for those in need. Sometimes, slow medicine gives patients what they need most. In Scherz’s view, “We need to aid the prudence, temperance, and courage of patients, allowing them to enjoy their good health without anxiety or a desperate attempt to extend life. Such spaces can exist only if we set limits to prevention and accept that as finite beings we must accept risks, and ultimately mortality, if we want to flourish in the present.” The Ethics of Precision Medicine is an insightful book and a healthy corrective for folks like myself who were almost entirely blind to the risks of precision medicine. There are great risks in trying to minimize all risks.