Sunday, February 14, 2010

Depoliticizing bioethics?

Book reviewers always work between two extremes. One says more about the book and its author, the other says more about the worldview of the reviewer. Some reviews more or less describe what the book is about and add a bit of commentary. Others make use the book's content as a point of departure for reviewer's own opinions. Most reviews lie somewhere in-between. But one thing is clear: whichever direction they take, book reviews in general don't generate a lot of excitement.

The same cannot be said, however, about Sally Satel's review of Observing Bioethics (by Renee C. Fox and Judith P. Swazey), at least in the small world of bioethics. Observing Bioethics is a sociology of bioethics as practiced in North America, and like any decent sociology of any social practice, it is a 'warts and all' view documenting strengths, pitfalls, successes and failures. The activity called 'bioethics' has become an important force in some (mainly North American and European) societies, on the one hand, while there have always been lingering doubts about the expertise and legitimacy of its practitioners. Fox and Swazey's research describes these doubts, while depicting bioethics as narrowly focused on individuals (more than groups and communities) and rationality (more than traditions and shared values), and being somewhat allergic to cultural diversity.

This is where Satel, the reviewer, takes the ball and starts to run with it. She takes the doubts about the expertise of those working in bioethics to answer ethical issues in medicine and research, and offers her own conception of the bioethicist's mission and social role:

Bioethicists can be great educators of students and physicians and policy-makers. When an expert in bioethics approaches a problem, such as an end-of-life decision, he brings a deep knowledge of the cultural history of that controversy and the relevant legal decisions. This allows him to draw analogies to current situations. He is skilled at deliniating conflicts, laying out assumptions behind different positions, evaluating the soundness of arguments, and reflecting on potential consequences.

According to Satel, what people working in bioethics should not do is something that Fox and Swazey in fact recommend: getting involved more centrally in issues of global suffering and social justice. Moving bioethics in that direction, according to Satel, would be a mistake. Bioethics should not be moving outward to engage with global issues, but stay closer to home: bioethics workers as educators, not advocates. And when they educate, they apparently should not be taking or promoting any firm position on the issues they are discussing. They should simply lay out the issues for those who will make the decisions in the 'real world'.

Those antithetical to bioethics have delighted in Satel's review. For them, she has taken bioethicists down a peg. Bioethicists claim in a sense to tell us how we ought to live, and Satel has reduced them from 'Wizards of Oughts' to masters-of-nought. It is easy to see the appeal Satel's view could have for those who wish bioethicists would not only disappear into the relative obscurity of academia, but vanish from the face of the earth. The only problem is that Satel does not argue for her position, but merely states it. And the view is not without its shortcomings.

The first problem concerns neutrality. Above all else, people working in bioethics formulate normative arguments in favor (or against) certain ethical positions, and not just offer a panorama of possibilities. They will, on the basis of those arguments, judge (by presenting reasons and evidence for) ethical positions as being better or worse than others. When they have reason to judge some positions as being better or worse than others, it would be irresponsible of them not to mention this, not only to those they educate, but also to the larger community, since the issues that bioethics deal with are social issues of common concern. Bioethicists do not have to possess some magical expertise, capable of producing definitive answers to complex ethical questions, to have something worth contributing to these debates. The activity of conducting normative analysis and argument about (bio)ethical topics is already political.

Second, the idea of a 'de-politicized' bioethics looks like a developed world fantasy, or luxury. Bioethics in other contexts has sometimes been a way of speaking truth to power in the domain of medicine, public health and health research, particularly against the background of corrupt Ministries of Health, dodgy pharmaceutical studies, and skyrocketing numbers of deaths from preventable and treatable diseases. When things get this ugly, a purely educative role for bioethics does not look like a mission worth having. It starts to look like a parlor game. As long as activism and advocacy is rooted in open, honest analysis and argument -- and not simple ideology from the right or the left -- there is nothing wrong with bioethics workers trying to help make the world a better place, or at least control the damage.


Thursday, February 04, 2010

Ethics, Zuma and the shield of culture

The controversy regarding President Zuma and his extramarital (and unprotected) sexual capers heated up significantly today. I was greeted this morning with the Cape Times headline: ZUMA DEFENDS LOVE CHILD. The growing media coverage, some speculative, provoked the President to react in the form of a press release. In the press release, the President decries the invasion of his privacy while admitting that he fathered a baby with Ms. Sonomo Khoza. Then he says something very strange:

I said during World AIDS Day that we must all take personal responsibility for our actions. I have done the necessary cultural imperatives in a situation of this nature, for example the formal acknowledgment of paternity and responsibility, including the payment of inhlawulo to the family.

That is certainly a new twist on the concept of personal responsibility. Translated into a new HIV prevention message, it runs something like this: when you have unprotected extramarital sex, and your sexual partner then has your child, do remember to pay compensation to the family. It's the right thing to do! This slogan should be all the rage on the international AIDS conference scene this year. Though perhaps a catchier version would be: clean up your fuck up. In a culturally appropriate way, of course.

Then the press release goes in an even murkier direction:

The media is also in essence questioning the right of the child to exist and fundamentally, her right to life. It is unfortunate that the matter has been handled in this way. I sincerely hope that the media will protect the rights of children.

When I read this, I couldn't get the image out of my mind of Arnold Schwarzenegger in Total Recall, in the scene where he picks up people and uses them as shields to protect himself from gunfire. In Zuma's case, he picks up a child (and its associated rights) in an attempt to shield himself from criticism: don't shoot the baby! In any case, the media has not focused on the right of the child to exist, if only because that boring issue does not sell papers. How the child came to exist is far more interesting.

The press release includes a statement about the possible impact of this revelation to HIV prevention efforts. The President assures us that intensified efforts in prevention, treatment and research will continue. The idea that his personal behavior could act as a template of rationalization for sexual waywardness in local communities ... that does not come into play. Nor his obvious personal dislike of condoms that he and his government promotes. Now you could argue that President Clinton had his affairs, so why shouldn't Zuma be allowed his Presidential flings? One answer is: that Clinton was not allowed, he was nearly impeached, besides being roasted in the press. But the better answer is: Clinton's actions did not take place during a heterosexually-driven HIV epidemic responsible for hundreds of lives every single day.

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Tuesday, February 02, 2010

South African presidents and HIV prevention: the madness never stops

Former South African president Thabo Mbeki famously denied that HIV causes AIDS, and affirmed that the HIV/AIDS epidemic was really just a ploy by pharmaceutical companies to squeeze money out of African countries. He supported 'rogue scientists' who tried to support this unorthodox view with scientific evidence, though the larger scientific community was profoundly unimpressed. When it became obvious that his position on the subject was untenable, he kept hush on the whole epidemic, while sending out his minions to discretely and not-so-discretely enact his viewpoint in health policy. It led to lukewarm HIV prevention efforts, right when a real show of force and determination was needed to save lives. There are still calls, in some quarters of South African society, for Mbeki to stand trial for this episode.

When Jacob Zuma came to power, there were misgivings. Here was a man who was accused (and eventually acquitted) of rape, and who during the trial affirmed that he had unprotected extramarital sex with a HIV-positive woman, and in addition, believed that a post-coital shower was sufficient to protect himself from the virus. It was not looking good. However, President Zuma did seem to take a more progressive stance on HIV/AIDS than his predecessor in the first year of office. There seemed to be more committment in regard to provision of anti-retroviral treatment and HIV prevention campaigns.

And now this. The news this week is that President Zuma has recently fathered a 'love child' with the daughter of the owner of the Orlando Pirates, a local professional soccer team. From which one can reasonably gather, another case of unprotected extramarital sex -- from a man with three wives, one fiance and 20 children already.

I was listening on the radio today to various condemnations and defenses of the president. The condemnations were predictable, and so were some of the defenses (especially opportunistic appeals to cultural relativism). But one defense struck me: that the sexual behavior of the president will not have an effect on HIV prevention in the country, because studies have shown that a person's sexual behavior is more likely to be influenced by his or her own peers than by his or her president. No need to worry.

Perhaps that is true, though more research is needed. What seems true is that South Africa is back to failed leadership again, in the most personal way: the president apparently cannot restrict himself to only five sexual partners, and when he breaks out, he can't locate a condom dispenser. And when he is sitting there at the next World Aids conference, with his red ribbon on, promoting the use of condoms, what are we supposed to think?

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