Ethics of Science and Medicine Never Again?

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Ethics of Science and Medicine
Never Again?

by Paul Farmer

Paul Farmer is a physician who founded an organization called Partners in Health, which was originally dedicated to providing medical relief to Haiti. Farmer and his organization is the subject of a book by Tracy Kidder entitled Mountains Beyond Mountains.
One of the fundamental questions Farmer addresses in this lecture is whether access to health care should be considered a fundamental human right. To this end he introduces the concept of “structural violence”, which indicates suffering that arises from the structure social institutions, rather than the actions of specific people.
In Pinker’s essay he noted that humans are becoming less violent towards each other when violence is measured by specific acts of aggression. Of course, on this definition, the millions of people who die each year from tuberculosis, malaria and AIDS do not count. Farmer’s attempt to connect the concept of disease with the concept of violence provides an alternative perspective.
To this end, Farmer relates the moving story of Joseph, a 26 year old Haitian man, who in March 2000 presented with AIDS and disseminated tuberculosis. He was on death’s door, and his parents had been arranged for a coffin. However, he was transported to Farmer’s clinic and after aggressive therapy for 6 months for both conditions his life was saved.
This is the sort of success story that everyone can feel good about, but Farmer acknowledges that the treatments were extremely expensive, and that from an objective point of view the money might have been put to better use for a greater number of people. (If you read the book, you will learn that even people within Farmer’s organization are Farmer for using scarce expensive resources to save people in this condition. The fact that sometimes works must, after all, be balanced against all the times when it does not.)
Farmer is not content to make the usual appeals to compassion, pity, mercy, etc. He does not derogate these emotions, but he thinks it is clear that the “politics of pity” simply doesn’t end up doing many people much good. He recognizes that a strong positive argument for his intuitions requires some legitimate appeal to human rights.
To understand Farmer’s position it is important to realize that in political philosophy it is traditional to distinguish between two kinds of good that a social contract may be expected to provide.

  • Protection

  • Welfare

Virtually everyone agrees that the fundamental purpose of the social contract is to keep people from hurting each other, and most agree that this should be accomplished while preserving as much individual liberty as possible. This is where our so-called fundamental human rights come from: equality, life, liberty. The question arises, however, whether one is not also fundamentally entitled to some degree of actual aid from others. If, for example, you are sick or destitute through no fault of your own, are we not similarly entitled to some degree of protection from nature itself?

Many people have the strong intuition that, while it is noble for a person to help people in need, one does not actually violate the rights of another by failing to come to his aid. Since this applies to people in our own society, it would seem to apply to the suffering experienced by people outside our society with even greater force.
Farmer does not share this intuition, and he thinks it is eroded considerably when people are actually forced to consider the plight of children. For example, consider two different babies, one born in an affluent and loving household and raised with all the privileges of wealth; the other is born to extreme poverty and raised under physically and socially abusive conditions. Everyone can see that this is an inequality, but does anyone seriously think that is one that we have no obligation at all to mitigate? If human rights have any meaning at all, don’t humans have a fundamental right to a decent start in life?
Beyond this, however, Farmer’s article is dedicated to demonstrating that the poverty and disease experienced by places like Rwanda, Sudan, and Haiti are not, somehow, their own doing. These countries were essentially raped and pillaged by European colonizers. Farmer is especially concerned to relate story of France’s role in the destruction of the natural resources of Haiti, as well as U.S.’s at least tacit support of the overthrow of a democratically elected president, Jean Aristide.
After relating other examples of extraordinary human suffering, and discussing the politics of photography as a means of breaking down artificial borders, Farmer notes that the concept of human rights has evolved since the 18th century, and in fact the United Nations declarations of human rights captures the intuition that we have a strong responsibility to alleviate suffering in the world, regardless whether we had a hand in causing it.
Article 25: Everyone has a right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing, and medical care and necessary social service, and the right to security in the event of unemployment, sickness disability, widowhood, old age or other lack of livelihood in circumstances beyond control.
Farmer interesting blames cultural relativism and postmodernism for failing to take declarations like this seriously. His point is that cultural relativists and postmodernists are inclined to take statements such as Article 25 as expressions of sentiment, or cultural preference, but not actual truths.
In the end, Farmer is advocating for global awareness of suffering and poverty, by whatever means are at our disposal. Though he does not share Singer’s utilitarian perspective, they have similar intuitions about what is required to live a moral life, and that most of use are living a quite impoverished one now to the extent that most of our economic decision making takes place without any serious consideration of the rights of the poor.

The Ethics and Economics of Heroic Surgery

by Peter Ratiu and Peter Singer
In this short essay, Ratiu and Singer take on the problem noted at the beginning of Farmer’s essay, namely the devotion of scarce resources for the purpose of helping one, or a few, individuals.
The case they focus on is extraordinarily expensive, successful separation of conjoined twins. Although there are moral issues relating to the surgeries itself (in each of these cases, one of the twins died as a result), Ratiu and Singer argue that the truly compelling moral question is the use of extraordinary public resources to save the life of one child. Hence the question, is whether it is always imperative to try to save the life of a newborn.
Interestingly, R&S note that the 500,000 dollars required for the surgery (all at public expense) could have paid to cure 2500 cases of tuberculosis in Haiti. They note that from the point of view of the taxpayers, the only way to justify something like this is to claim that the life of this infant is worth the same or more than 2500 Haitian children. (If you aren’t comfortable crossing international borders, they also provide examples of multiple lives that could be saved in the U.S. with the same amount of money.)
We have all been trained to think of the rationing of health care as an evil. When we or our loved ones are ill, we expect the best health care available. If, there is a small chance that we have a deadly disease, we do not believe it is acceptable to refrain from testing for it simply because the test is very expensive. On the other hand, it’s easy to appreciate that the incredible cost of medical insurance, surgery and drugs is due to this very fact. Doctors are advocates; they typically will spare no expense to provide for the health of their patients. But it all has to be paid for.
Singer and Ratiu note that doctors and clinicians are not the people to be deciding whether heroic surgeries should be done. But somebody has to. Third party panels are required to assess the cost of such procedures and determine whether it is worth it considering the larger needs and obligations of society

A Knife in the Back

by Jerome Groopman
Singer’s and Ratio’s concerns relate to surgeries that actually accomplish their goals. In this article, Groopman is concerned with the ones that are performed at huge expense and which actually don’t work at all. Writing in 2002, he notes that
Last year, approximately a hundred and fifty thousand lower-lumbar spinal fusions were performed in the United States. The operation, which involves removing lumbar disks and mechanically bracing the vertebrae, is of tremendous benefit to patients with fractured spines or spinal cancers; more frequently, however, it is performed to alleviate chronic lower-back pain. But how effective is it? That’s a question that many of the doctors who perform the fusions, and the insurers who pay for them, appear reluctant to ask.

The back pain in question is often the result of ruptured or protruding disks between the vertebrae. Groopman discusses the plight of a particular patient who is subject to a very painful and, of course, expensive analytic technique called discography, which Groopman notes has been shown to have almost no diagnostic value. Beyond that, he notes that the use of other extremely expensive diagnostic techniques to justify surgeries is supported by extraordinarily weak evidence:

CT and MRI scans, which usually precede discography, are often used to make the case for surgery, but the correlation between damaged or degenerated disks and lower-back pain is far from conclusive. A recent study of CT scans showed that twenty-seven per cent of healthy people over the age of forty had a herniated disk, ten per cent had an abnormality of the vertebral facet joints, and fifty per cent had other anatomical changes that were judged significant. And yet none of these people had nagging back pain. Another study, using MRI scanning, showed that thirty-six per cent of people over sixty had a herniated disk, and some eighty to ninety per cent of them had significant disk degeneration in the form of narrowing or bulging. Given that degenerated disks are often found in people who are fully functioning, it shouldn’t be assumed that they are always the cause of the trouble.

Groopman goes on to note that the causes of back pain are extremely diverse and complicated. There are many different potential sources of pain and the diagnostic tests that are used and trusted pretty much depends on what kind of doctor you go to see.

A 1994 research study entitled “Who You See Is What You Get” demonstrated that each group of specialists favored the diagnostic tools of their discipline. Neurologists ordered electromyograms (EMGs)—tests in which the integrity of the neural-conduction system is assessed by inserting electric needles into muscles and along nerve tracks. Rheumatologists, who are experts in arthritis and other joint disorders, ordered serologies—blood tests that identify relatively rare autoimmune conditions that affect the spine. And surgeons requested MRI scans, which reveal the anatomy of the disks and vertebral bones and may suggest a surgical solution.

The point here is that these are extremely competent, highly trained people who use very expensive diagnostic techniques to arrive at conclusions that are almost entirely unwarranted. Moreover, Groopman notes that there is an enormous economic incentive for performing back surgeries, even though they have been shown to be unnecessary in the majority of cases where patients present with back pain. The pain produced by ruptured discs almost always abates over time as the inflammation subsides. Groopman notes, however, that there are some serious forces working against conservative attitudes to treatment, namely when patients have an accident or injury on the job, a job they’d prefer not to be doing. Disability benefits are higher, and longer work absences are justified by a recommendation for surgery.

Groopman discusses the grizzly details of spinal fusion therapy on the lower back, the evidence that it rarely works, and presents some evidence that it is so lucrative for surgeons, that they are very reluctant to have their results studied. Spinal fusion is just one of many procedures that fit this description. (The value of arterial stents has been questioned on identical grounds, for example.)

It’s also interesting to compare Groopman’s point here to his article on PTS. You may remember that the best treatment is not the standard debriefing, but a rather taxing form of cognitive therapy. Something similar is the case here. In fact, by far the best therapy for most lower back pain is aggressive rehabilitation exercise.

[A] program of aggressive rehabilitation exercise has been supported during the past decade by prospective studies. A recent analysis of sixty-seven patients with long-standing back pain, nearly all of whom had had prior surgery or other forms of treatment, showed that the regimen improved physical capacity and reduced pain. Between twenty-five and forty per cent of the patients for whom performing flexion and extension maneuvers was painful when they entered the program were free from pain by the time they were discharged; the others experienced a marked reduction in the intensity of their pain. Still, Rainville argues, it will be impossible to properly compare the results of such nonsurgical interventions with surgery until both options are included in a well-designed randomized study.
Doctors Without Borders

by Shannon Brownlee

Brownlee here examines the conflict of interest that exists within the the medical profession by virtue of its relationship to drug and biotech companies who are anxious to sell the treatments they develop. Brownlee begins by highlighting the work of Dr. Charles Nemeroff, a prominent researcher who is also a consultant to and shareholder in several drug companies.
But it was just three of Nemeroff's many financial entanglements that caught the eye of Dr. Bernard J. Carroll last spring while reading a paper by the Emory doctor in the prominent scientific journal, Nature Neuroscience. In that article, Nemeroff and a co-author reviewed roughly two dozen experimental treatments for psychiatric disorders, opining that some of the new treatments were disappointing, while others showed great promise in relieving symptoms. What struck Carroll, a psychiatrist in Carmel, Calif., was that three of the experimental treatments praised in the article were ones that Nemeroff stood to profit from--including a transdermal patch for the drug lithium, for which Nemeroff holds the patent.

Carroll exposed this conflict of interest with a piece in the NY times and it sparked a great deal of public interest. Brownlee notes that the journal failed in the quite minimal expectation that such conflicts should be revealed to the public, but poses the stronger questions, namely: Why would scientists with a financial stake in the outcome of a study be permitted to participate in at all? She writes:

The answer to that question is at once both predictable and shocking: For the past two decades, medical research has been quietly corrupted by cash from private industry. Most doctors and academic researchers aren't corrupt in the sense of intending to defraud the public or harm patients, but rather, more insidiously, guilty of allowing the pharmaceutical and biotech industries to manipulate medical science through financial relationships, in effect tainting the system that is supposed to further the understanding of disease and protect patients from ineffective or dangerous drugs. More than 60 percent of clinical studies--those involving human subjects--are now funded not by the federal government, but by the pharmaceutical and biotech industries. That means that the studies published in scientific journals like Nature and The New England Journal of Medicine--those critical reference points for thousands of clinicians deciding what drugs to prescribe patients, as well as for individuals trying to educate themselves about conditions and science reporters from the popular media who will publicize the findings--are increasingly likely to be designed, controlled, and sometimes even ghost-written by marketing departments, rather than academic scientists. Companies routinely delay or prevent the publication of data that show their drugs are ineffective. The majority of studies that found such popular antidepressants as Prozac and Zoloft to be no better than placebos, for instance, never saw print in medical journals, a fact that is coming to light only now that the Food and Drug Administration has launched a reexamination of those drugs.

As Dr. Drummond Rennie, deputy editor of The Journal of the American Medical Association (JAMA), puts it, "This is all about bypassing science. Medicine is becoming a sort of Cloud Cuckoo Land, where doctors don't know what papers they can trust in the journals, and the public doesn't know what to believe."

Brownlee explains the status quo in terms of some 1980’s changes in patent law, permitting universities to commercialize products and inventions without losing their federal research funding. The purpose here was to stimulate a constructive relation between research and industry, and it in fact did quite a bit of good. Initially it permitted drug companies to contribute to promising research, with the promise that they would be able to develop and profit from any resulting therapies. The problem, of course, is that eventually the money they were offering permitted drug companies to exert too much influence over the direction and the results.

Brown notes that:

At least eight studies have shown that industry-sponsored research that gets published tends to produce pro-industry conclusions, according to a review by Yale University researchers that appeared last year in JAMA. By reanalyzing data from eight separate studies of the effect of conflict of interest on 1,140 published scientific papers, the researchers found that papers based on industry-sponsored research are significantly more likely to reflect favorably on a sponsoring company's drug or device than research that is supported by a non-profit entity or the federal government.

Obviously, it is this kind of reality, as well as the one that Groopman describes, that has to make one reconsider Panglossian characterizations of scientific neutrality and objectivity.

What’s important to realize here is that this is really the sort of structural violence that Farmer was talking about. It’s tempting to personalize problems like this and attribute them to evil people, but the vast majority of people involved on both side do not see themselves as involved in any kind of misbehavior. Brownlee writes:

"Lots of eminent people took great offense at being accused of being influenced," Relman told me recently. "'What an insulting thing to say. I value my reputation; doctors and scientists know best. Trust us.' I spent the first 25 years of my career doing clinical research and being one of them, and I know the feeling." As Harvey Lodish, professor of biology at MIT, huffed to Technology Review in 1984, when Relman first required disclosure at the Journal, "Scientists have all kinds of private consulting arrangements with biotechnology companies and many own stock in these companies, but that's nobody's business. It has nothing to do with the quality of their research."

Of course, Brownlee’s article can have the unfortunate effect of making people think that the vast majority of medicines being developed are ineffective, harmful, etc.. She isn’t really providing evidence for that here.

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