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by Lori Andrews and Dorothy Nelkin
Crown Publishers, 2001
Review by Ann Heesters on Mar 14th 2002

Body Bazaar

In 1914 Justice Benjamin Cardozo uttered an oft-quoted sentence that might well be regarded as the most simple and powerful statement in support of patient self-determination:

“Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault for which he is liable in damages.”  Of course, even simple statements require interpretation in light of fresh or unanticipated circumstances and legal scholars and medical ethicists have had ample occasion to revisit these words with worries about the meaning of key terms like “soundness” and “consent.”  In a clinical setting, challenges arise in the effort to determine the applicability of informed consent doctrine to those with intermittent or only local capacities for self-determination, and even individuals who appear to exhibit paradigm-case rationality may test the limits of the principle of autonomy when their values diverge markedly from those of the rest of our community.

It is not surprising, therefore, that the “biotechnology age,” as Andrews and Nelkin dub it, frequently leaves the judiciary and legislature at a loss for direction.  Hard cases arise, for example in the field of patent law, and it is not necessarily a simple matter to determine who the appropriate rights-holders are when, say, diagnostic tests are developed using some individuals’ expertise and others’ genetic materials.  Furthermore, even that which appears to be unproblematic, that one has an nearly unqualified right against bodily intrusions, seems to be open to question in the face of powerful pressures from scientific and commercial interests (interests which frequently are indistinguishable).  Researchers, insurers, and employers have all successfully defended specific instances of genetic testing without informed consent.  Those giving blood or urine samples as part of “routine” physical examinations may be shocked to discover that their predisposition toward inherited disease is being assessed along with their current health status.

One might argue, along with the genetic investigators, that the knowledge so derived has great value for those subject to their inquiries.  Indeed it may, but Andrews and Nelkin make a powerful case for sometimes choosing ignorance.  Some genetic disorders may be without remedy and knowledge of them may precipitate a lifetime of worry or despair.  Moreover, knowledge of a genetic predisposition, even when it requires an environmental trigger or has only a slight chance of becoming manifest, may have profound practical consequences for an individual and his family members.  They may be rendered unemployable or uninsurable, or be denied educational opportunities on the grounds that they represent poor investment prospects.  (The authors cite numerous cases where this has already occurred to dispel any thoughts that these are fears based in overheated speculation.)  This is despite that fact that each of us possesses eight to twelve genetic defects - defects that generally remain unknown to us throughout our lifetimes.

And, as if the possibility of a lifetime of surveillance, weren’t enough, Andrews and Nelkin report on the diverse ways that privacy and bodily integrity may be undermined even after death.   “Postmortem poking,” as the authors so colourfully put it, takes many forms.  Some purposes are benign or, indeed, desirable:  the victims of murderers may be identified by scant remains, “illegitimate” children may obtain satisfaction in paternity suits, and with soldiers’ DNA on file even the hyper-destructive modern battlefield need no longer produce unknown soldiers.

These purposes are relatively well known and, for the most part, are well tolerated.  What may startle readers is the fact that the law grants us little or no property interests in our own bodies, and by extension to the information they yield.  Sometimes this is a good thing, and can be used by the courts to discourage the tendency toward the commercialization of organ donation or the new reproductive technologies.  Unfortunately, as is often the case as law and ethics struggle to keep pace with scientific advance, ad hoc decisions serve when principled arguments are most needful.

Andrews and Nelkin urge a reappraisal of informed consent doctrine in light of these considerations.  After all, one’s willingness to submit to tests for a specific disease need not imply that one has no concern for privacy or that one’s specimens be used for an indefinite period of time or for any purpose imaginable.   The authors also challenge the increasing tendency to prioritise commercial interests.  Even if  “What’s good for General Motors is good for the country,” it doesn’t necessarily follow that “What’s good for Biotechnology is good for those who suffer from genetic disease.”  As in the early days of capitalism, there needs to be thoughtful reappraisal of the way that the profit motive operates.  To cite but one example, tests for a predisposition toward breast cancer can do only limited good if they are available only to those who can absorb costly licensing fees.  Moreover, the so-called free market depends heavily on government research grants and the good will (or desperation) of volunteer subjects.

Body Bazaar is a compelling and thought-provoking text.  Like most works in biomedical ethics it is concerned more with raising hard questions than with answering them.  Occasionally it reads more like hard-hitting investigative journalism than an academic text, but I take that to be one of its strengths.  This is a subject worthy of extensive public debate, not merely scholastic meditation.   

 

© 2002 Ann Heesters

 

 

Ann Heesters is a doctoral candidate in the philosophy programme at McMaster University in Hamilton, Ontario.  Although she specialises in legal theory, she also works in applied ethics and is currently serving as the clinical ethics intern for Hamilton Health Sciences.