The Routinization of Prenatal Testing
![handle is hein.journals/amlmed28 and id is 241 raw text is: American Journal of Law & Medicine, 28 (2002): 233-270
0 2002 American Society of Law, Medicine & Ethics
Boston University School of Law
The Routinization of Prenatal Testing
Sonia Mateu Sutert
The technology was available, so why not use it? - Words of an expectant father
By now everyone is familiar with the recent accomplishments of the Human
Genome Project. Accomplished in ten, rather than the initially expected fifteen,
years, the human genome has been fully sequenced. Genetics is in its golden age. A
product of the technology era, genetics has, in a short time, offered vast amounts of
information. This increased knowledge promises potential benefits for our
understanding of the disease process and, ultimately, treatment and prevention. The
rapid flow of information, however, presents complications and challenges. It can
complicate the decision making process for those involved in genetic testing, not only
because our knowledge of genetics is more complex, but because there is so much
more potential information to obtain. The sheer quantity of information for both
researcher, clinician and especially patient, can be overwhelming. In addition, our
ability to glean predictive or susceptibility information has vastly exceeded our
ability to develop cures for diseases; patients can increasingly identify risks for
conditions that they can do little to avoid.
The expansion of genetic information has created a new class of genetics
patients: the adult at risk for late-onset conditions. Once a field devoted primarily to
expectant or future parents, genetic counseling increasingly includes adult genetics.
With this growing area have come concerns about the costs of getting genetic
information. A woman might learn that she has the BRCAI gene, but data are still
uncertain about precisely what this means in terms of her risk of breast or ovarian
cancer and what she can do to reduce her risk. People with a family history of
Huntington Disease (HD) may choose to find out whether they have the gene that
virtually guarantees they will develop the disease, if they live long enough. But it is
currently impossible to predict the age of onset and no cure or prevention is available.
As a result, anxiety and distress can be associated with finding out one does or does
not have a late-onset gene.] Geneticists and ethicists have therefore urged caution
and care in the decision making process. More importantly, many have suggested
that knowledge may not always benefit everyone. For some, it can be toxic.
t Associate Professor, George Washington University Law School. B.A. 1985, Michigan State
University; M.S. Human Genetics 1987, J.D. 1994, University of Michigan. I thank my colleagues who
offered valuable comments when I presented a draft of this Article in a faculty workshop- Special
thanks to Naomi Cahn, Shi-Ling Hsu, Renee Lettow-Lemer, Chip Lupu, Joan Meier, Dawn Nunziato,
Dick Pierce, Steve Schooner, Mike Selmi, Peter Swire and Bob Tuttle. I also want to thank my research
assistant, Erica Barber, and my library liaison, Carol Grant, for their rigorous research efforts.
I Surpising and unexpected negative emotional reactions have occurred in people who
expected to have a late-onset gene and found out they did not. See infra text accompanying note 28.](ViewImageLocal?handle=hein.journals/amlmed28&div=18&collection=journals&method=preview&ext=.png&size=3)
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The Routinization of Prenatal Testing
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