http://www.mercatornet.com/Newsletterv0810/view_txt/aids_and_medical_ethics_a_great_betrayal AIDS and medical ethics: a great betrayal
Matthew Hanley | 25 September 2012
The September 5th edition of the Journal of the American Medical Association (JAMA) reports on the prospect of “pre-exposure prophylaxis” as a means of preventing HIV transmission. This term refers to people who are uninfected with HIV taking a prolonged course of sophisticated medications because they anticipate sexual contact with an HIV-infected person. In July, the FDA approved an expensive antiretroviral drug which can reduce but not eliminate the risk of becoming infected. (The level of effectiveness varies by mode of transmission; women also seem to derive less benefit).
One article describes the findings of the studies that led to FDA approval, and discusses its potential as well as its main challenges. This pre-exposure prophylaxis is “only partially effective”; trials estimated it could be anywhere from 44 percent - 90 percent effective, depending on a number of factors, including levels of adherence. “In real life”, they concede, maintaining an optimal combination of technical requirements is “a lot easier said than done.” Reproducing even promising results from controlled trials in everyday life among the entire population is known to be far from guaranteed.
They generally downplay the possibility that the introduction of such prophylactic drugs would actually increase risk-taking and therefore have less epidemiological impact than forecast. Yet we know that risky behavior has increased following the introduction of antiretroviral therapy and post-exposure prophylaxis. The fact that behavior has tended to adapt to medical innovation helps explain why HIV incidence has remained pretty much the same in the U.S. for the past decade; even AIDS establishment leaders concede the failure. Despite medical advances, the treatment regimens and other technical measures long touted as critical prevention measures have flat-lined.
HIV prevalence has even been rising in Uganda in recent years despite -- or rather, because of -- the massive foreign investment in treatment and other risk-reduction measures with an extensive track record of failure. This is particularly instructive since Uganda is well-known for having by far the most success of any country with HIV prevention by developing its own simple program which clearly stressed sensible behavior changes over technical risk-reduction strategies.
That many prior technical developments have not led to reductions in HIV incidence rates does not mean that the next one never will. But decades of failure plainly indicate that behavior still drives AIDS epidemics.
Poor ethics follows poor thinking
We normally associate the field of ethics with the rightness or wrongness of forms of behavior – but as a category, the behavior driving the epidemic itself does not feature in JAMA’s other article which is devoted explicitly to the ethical implications of this pre-exposure prophylaxis.
If you were wondering – as sadly, you must nowadays – just what passes for ethical commentary with JAMA, keep in mind that in April, they published a glowing endorsement of a disturbing book (Death, Dying and Organ Transplantation: Reconstructing Medical Ethics at the End of Life) written by professionals at the National Institutes of Health and Harvard, with unabashedly radical proposals. They argue that the “dead donor rule” should no longer hold sway; in other words, vital organs may be removed for transplantation before the “donors” die. They also discard the distinction between withdrawing some forms of treatment and active euthanasia, coming right out and stating that “medicine should no longer be governed by the norm that doctors must not intentionally cause the death of their patients.”
But it is precisely through the “government of our thought”, the 17th century mathematician and philosopher Blaise Pascal felt, that we must seek our dignity – a concept central to most strains of bioethics. Pascal notes, in his Pensées, that man is feeble and therefore vulnerable – but he is nonetheless “a thinking reed”. It is by thought, more than anything else, that we elevate ourselves: “Let us endeavor, then, to think well,” he famously exhorted. “This is the principal of morality”.
Poor ethics, then, follows poor thinking, of which there is an unfortunate surplus. Much of JAMA’s ethical analysis of pre-exposure prophylaxis revolves around considerations of equality and justice – how evenly the new high-tech meds will be accessed. At $10,000 – $14,000 per year, it will be out of reach for many, particularly the “underserved” here and the rank and file abroad.
Legitimate as such questions may be – leaving aside important qualifications, particularly regarding the need to recognize the market mechanisms by which medications come into existence – a broader discussion of equality would lead to some uncomfortable questions. Spending on AIDS research and treatment, for example, is often much, much higher relative to other serious and prevalent conditions. This type of inequality, apparently, is not just tolerable but imperative – even though it means that other people afflicted with other maladies do not benefit from an equal share of research and treatment dollars.
“All forms of sexual behaviour are equal”
The wide disparities in medical resource allocation amply demonstrate that equality as such is not really an overarching, operative ethical consideration. In the realm of AIDS policy and activism, equality has its own distinct if unstated connotation. Equality is, in essence, a device – a narrow and mistaken caricature – employed in protest against the realities of nature. Let me briefly explain.
The modern secular mind is governed by the thought that all forms of sexual expression are equal and therefore inherently licit, as long as they are not coercive. This of course clashes with the objectively unequal epidemiological profile of HIV, which dictates that some forms of behavior are much riskier than others (i.e. same sex and multiple partners).
This conflict between the purported – the demanded rather than demonstrable – ethical equality of all acts and biological realities is one that science is called upon to resolve. But an underlying ethical commitment has already been made: equality of sexual behavior is an absolute. It is not subject to the scrutiny and constraints normally associated with ethical reasoning.
I do x, y or z, and it is right not from on objective point of view but because it is I who do it. If x, y or z happens to be dangerous by nature, then nature must be corrected by science. My own ethical judgments need not undergo any re-evaluation to conform to reality. The foreseeable, heightened prospect of infecting others or myself with a nasty virus is a technical problem to be solved by medical science, not an ethical red flag.
Thus reframed, we are now dealing not so much with ethics as a discipline concerned with right or wrong, as we are with the capacities of science to overcome nature regardless of the underlying if contentious moral considerations. Confirm thy soul in self control might as well be an artifact of a bygone era. Its replacement: No need for self control; that’s science’s role.
This type of omission is the most glaring defect of JAMA’s analysis. They contend that, assuming 44 percent effectiveness, the prophylactic regimen would be cost-effective for males who average five other male partners per year. The authors do not comment on the ethics of such behavior. To do so would not just prompt snickering and professional ostracism but, to judge from the rhetoric favored by activists, verge on the hate-crime – even though recommending avoiding the risk altogether, the healthiest option available from a purely pragmatic perspective, is the product not of hate but of holding people in high regard.
The deepest problem with medicalized prevention strategies is that they manage to hold people in both too high and too low regard: too high in that they condone and facilitate all manner of behavior, seeing no need for restraint because man can do no wrong; too low in the belief that man has no capacity to change, and is irrevocably locked into some destructive lifestyles.
Here is Pascal’s pertinent diagnosis:
“It is dangerous to make man see too clearly his equality with the brutes without showing him his greatness. It is also dangerous to make him see his greatness too clearly, apart from his vileness. It is still more dangerous to leave him in ignorance of both.”
To veer too far in either direction is to cultivate disaster. Part of man’s greatness lies precisely in his capacity to recognize his wretchedness; far better it is to view man, like Pascal, as a “deposed king”.
The risk reduction philosophy recognizes neither his greatness nor his wretchedness. It only aims to sanitize and thereby perpetuate hazardous pursuits. It regards with xenophobic disdain what Augustine discovered to his everlasting delight (after his own personal trial and error): that the law written in men’s hearts is such that not even ingrained wickedness can erase it. (See Confessions, Book Two, Chapter 4)
An ethic of normalisation
We are also informed in the JAMA article that “many people who know their status have neither disclosed their HIV status to their partners nor learned their partner’s status.” This is all footnoted, and stated non-judgmentally. The ethical implications are passed over in utter silence. Such behavior must not be deemed inconsiderate, much less discouraged as unwise, inadvisable, or unjust. (By contrast, authorities have mobilized to ban the sale of large sugary drinks in New York as a means of tackling diabetes).
“When all tend to debauchery”, Pascal observed, “none appears to do so. He who stops draws attention to the excess of others, like a fixed point.” To draw attention to the need to stop HIV-transmissible behaviors which have long since been “normalized” is to invite hostility. But ethics emptied of fixed, objective norms becomes little more than the imposition of scientific knowledge and capacities which have a tendency to be developed and imposed selectively – very unequally! – by those and for those with power.
People find themselves in undesirable and chaotic circumstances for a whole host of reasons. But that does not mean those circumstances must persist interminably – that appeals to another way of life are futile and that the only way forward is to pull the right combination of technical levers.
But JAMA and other Public Health authorities remain mostly unwilling to disturb the “ethic of normalization” that really is not so ethical after all. It is also an ethic of despair and capitulation. There is a certain sadness in the prospect of an uninfected person indefinitely taking the same type of drug that HIV infected persons must chronically take to prolong their lives – even before considering the great expense, the real prospect of serious side effects such as kidney impairment and bone density loss, the implications for drug-resistance down the line, and the impartial nature of the protection it provides against HIV.
Pascal recognized this very dreariness – and its antidote:
“Physical science will not console me for the ignorance of morality in the time of affliction. But the science of ethics will always console me for the ignorance of the physical sciences.”
The science of ethics, which implies universally binding principles, loses its capacity to console when it becomes merely an ethic of science – a vehicle to administer whatever the physical sciences can deliver. This only brings us back to square one; it gets us no closer to the Socratic counsel to “know thyself.”
Consolation begins by recognizing, with Augustine, the bitterness which by nature flavors the sweetness of some pursuits. There is a seed of hope in acknowledging that bitterness, for it can point us to other possibilities. Desolation has yet to be defeated by scientific advance, but with a properly scientific set of ethics – and loving human company – it is never insuperable.
Matthew Hanley is the author, with Jokin D. Irala, of Affirming Love, Avoiding AIDS: What Africa Can Teach the West
