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Thursday, May 10, 2007
Therapy or Enhancement? Two Hard Cases
Drawing the line between “treatment” and “enhancement” is famously difficult. Much of the difficulty stems from the lack of agreement on what counts as an enhancement. I prefer to say (following my colleague Eric Juengst) that enhancement improves an individual’s capabilities other than for the purpose of preventing or treating a disease or condition. This approach allows us to understand that some “treatments” raise a person above species norms – such as immunizations, which boost the immune system to a degree greater than that found naturally – but are not “enhancements.” It also recognizes that some “enhancements” may not elevate a person beyond species norms – a person who increased her IQ from 130 to 140 would be “enhanced” but still normal.
I have recently been considering two types of interventions that do not fit easily within either the treatment or enhancement categories. The first I call “goal-based anti-injury enhancement.” My research associate Patricia Powers pointed this category out to me. Her example was the enhancement technology research program of the Department of Defense. DOD’s objective is to provide soldiers with better biomedical protection against injury or death, in ways that exceed species norms, if not limits. A 2007 report in Wired described the goals of the program in terms of “more energy, less sleep, smarter analysis … , augmented cognition, better digestion, [and] tougher bodies.”
In one sense, this kind of enhancement resembles preventive medicine, since it aims to protect against sickness and injury. But in preventive medicine, the goal is to protect against sickness and injury – a medicinal end – whereas in the military experiments, the goal is to protect against sickness and injury in order to permit soldiers to complete their missions, during which they will be exposed to a much greater risk of severe injury and death than normal. In other words, the military is looking for ways to protect soldiers against abnormal amounts of harm that would prevent them from performing a certain role – recently officially renamed from “soldier” to “warfighter” – in order to achieve a specific goal: destroy the enemy. Hence I call it “goal-directed injury-prevention enhancement,” distinguishing it both from medical injury prevention on the one hand, and from the usual type of enhancement on the other.
What is especially interesting, I pointed out to Trish, is that the use of steroids by athletes is arguably another example of “goal-based anti-injury enhancement.” Most people undoubtedly believe that steroids increase muscle mass metabolically – that the muscles grow all by themselves, without any work, like fat. In fact, steroids improve performance by reducing the tearing of muscle fibers, an injury that accompanies all physical exercise, yet which is vastly exacerbated by sports. Athletes who take steroids thus can train harder without as much muscle fiber tearing, thereby allowing the muscles to grow faster. It is this, not magic, that increases the athlete’s capability, as reflected in the comment heard in sports circles that, far from enabling athletes to win medals without hard work, steroids allow them to work harder.
The policy issue that a boundary-confounding intervention such as goal-based anti-injury enhancement raises is whether it should be treated as medicine (since it prevents injury), or as enhancement (since its goal is to improve capability). If regarded as medicine, steroids would be regarded as ethical and therefore permitted, at least by competent, informed adults. Indeed, it would constitute the most revered type of medicine: “preventive medicine.” If regarded as an enhancement, on the other hand, most people would apparently want to ban them.
Note that I am not arguing that steroids should be allowed for use by adult athletes, like Olympians. In the first place, there is good reason to question whether a decision to use steroids by Olympic athletes is sufficiently voluntary. Even if it were, there is nothing wrong with the World Anti-Doping Agency precluding competitors from using steroids, just as there is nothing wrong with a gun club only allowing members to shoot old-fashioned muzzle-loading muskets. Although the Olympic stance might seem as quaint as civil-war re-enactment, there is nothing wrong with it. Conversely, there might be nothing wrong, ethically, with allowing all Olympic athletes to use steroids.
The second type of intervention that does not seem to fall neatly into either the “treatment” or “enhancement” category is an intervention that does not treat a disease or condition, but rather compensates for it. Imagine a paraplegic injecting steroids to strengthen her arms for wheelchair wheeling. The intervention is medicine-like in that it mitigates the effects of disability, but it does not target the underlying illness or condition directly. It is enhancement-like in that it improves a person’s capabilities. I therefore call it “compensatory enhancement.”
From a policy standpoint, compensatory enhancement challenges the conventional notion that scarce scientific research and health care resources should be devoted first toward treating or preventing ill health rather than toward enhancing capabilities. Through the enactment of laws such as the Americans with Disabilities Act, we acknowledge that persons with disabilities deserve “reasonable accommodation” so that they can reap the same societal rewards as persons who are not disabled. If compensatory enhancement is deemed reasonable accommodation, it could be required by law.
Compensatory enhancement also raises a policy issue in terms of whether it should give the disabled person a competitive advantage over persons who are not disabled, or merely make them equal. The sports world already has begun confronting this issue. Professional golfer Casey Martin, who suffers from Klippel-Trenaunay-Weber Syndrome, a degenerative circulatory disorder that makes it impossible for him to walk an 18-hole golf course, sought permission from the PGA Tour to use an electric golf cart. After the PGA Tour refused his request on the ground that a cart would “fundamentally alter” the competition, Martin sued under the ADA. In a 7-to-2 decision, the U.S. Supreme Court ruled for Martin, stating:
A modification that provides an exception to a peripheral tournament rule without impairing its purpose cannot be said to "fundamentally alter" the tournament. What it can be said to do, on the other hand, is to allow Martin the chance to qualify for and compete in the athletic events petitioner offers to those members of the public who have the skill and desire to enter. That is exactly what the ADA requires. As a result, Martin's request for a waiver of the walking rule should have been granted.
The dissenting opinion by Justice Scalia points out that the majority seems willing to require only an accommodation that levels the playing field, not one that gives the disabled athlete an advantage over other competitors, but gauging “competitive effect” will be extremely difficult. He notes:
[T]he Court guarantees that future cases of this sort will have to be decided on the basis of individualized factual findings. Which means that future cases of this sort will be numerous, and a rich source of lucrative litigation. One can envision the parents of a Little League player with attention deficit disorder trying to convince a judge that their son's disability makes it at least 25% more difficult to hit a pitched ball.
In short, the Court’s decision would seem to allow the International Association of Athletics Federations to bar double amputee Oscar Pistorius from trying to qualify for the Olympics with the use of carbon-fiber prostheses that allegedly enable him to run faster than an able-bodied competitor. In ADA language, this would be an “unreasonable” accommodation. But the conflicting evidence on whether a disabled athlete has gained an unfair advantage, described extensively in the majority opinion, illustrates how difficult such a determination can be.
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A Phony 'War on Science'
Michael Gerson, Washington Post
“In their talk of a Republican war on science, liberals may be blinding themselves to a very different kind of modern war in which their own ideals are deeply implicated: a war on equality.”
It’s Not Immoral to Want to be Immortal
Arthur Caplan, MSNBC
“Despite a lot of hand-wringing and finger-pointing, it is not obvious that wanting to live a lot longer is evil or immoral.”
Science Is Leading Us to More Answers, but It's Also Misleading Us
David A. Shaywitz, Washington Post
“Consumers of scientific information must balance the hope we place in global biology with the skepticism this field has surely earned.”
Taking the Scary out of Breast Cancer Stats
Carol Tavris and Avrum Bluming, LA Times
“The media understand how deeply women fear breast cancer, and the result is that every study that seems to find a link between some new risk factor and the disease makes headlines everywhere.”
Dollars to Doughnuts Diagnosis
Albert Fuchs, LA Times
“Insurance doesn't make routine care affordable; it makes it more expensive by adding a middleman.”
Tainted Medicine
Jerome P. Kassirer, LA Times
“Disclosure of financial ties may give a scientist or researcher a clean conscience, but that doesn't erase the possibility of a conflict.”
Children's health can't be left to faith alone
Arthur Caplan, MSNBC
“Parents do not have the right to watch a child wither away while they pray.”
Transplant List Numbers Raise Doubts
Arthur Caplan, MSNBC
“The American people have a right to expect absolute honesty about the number of people waiting for a transplant at any time.”
An Epidemic No One Wants to Talk About
Robert E. Fullilove et al., Washington Post
“Simply put, we will never rid the United States of HIV and other STDs if our only weapon is medical treatment.”
Making Cells Like Computers
Erik Parens, Boston Globe
“Conceivably, we are on the verge of installing synthetic genomes in bacterial cells to create products we want. But we are still a long, long way from doing what most people mean by ‘synthesizing life.’”
Miracle Workers?
David Rieff, New York Times Magazine
“Even today, the oldest of all relations between patient and physician — that of supplicant to shaman — continues to exert its authority.”
Overselling Overmedication
Judith Warner, NYTimes.com
“Most of the critics decrying the over-medicalization of the American mind rest their arguments upon the bedrock assumption that people who have nothing wrong with them are being medicated for largely fictitious concerns.”
Ads Spur Urge for Drugs
David Lazarus, LA Times
“DTC advertising has turned prescription drugs into just another gotta-have-it consumer product.”
Food Politics, Half-Baked
James E. McWilliams, New York Times
“Lost in this rhetorical battle was a quiet middle ground where the benefits and drawbacks of genetically engineered crops were responsibly considered.”
Perpetrating the Autism Myth
Benjamin Kruskal and Carole Allen, Boston Globe
“The scientific evidence is clear: neither the MMR vaccine nor thimerosal (mercury) in vaccines has any relationship to autism.”
Closing the Barn Door After the Cows Have Gotten Out
Verlyn Klinkenborg, New York Times
“The real beneficiaries are the nation’s large meatpacking companies — the kind that would like it best if chickens grew in the shape of nuggets.”
Human Embryos Cloned: What Does It Mean?
Art Caplan, MSNBC
“Let's not be frightened by scare tactics into not funding research that may be the key to curing what is currently incurable.”
Don’t Ask, Don’t Tell Is Bad Policy for Cloned Food
Art Caplan, MSNBC
“All of this fear-mongering about clones has made Americans forget that cloning is nothing more than artificially creating twins.”