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.                                   

Categories: Genetics, Ethics

Tags: Science (General), Behavioral and Cognitive Sciences