Ethical Issues in Pediatric Genetics: Views of Geneticists, Parents and Primary Care Physicians
![handle is hein.journals/hthlj6 and id is 7 raw text is: Ethical Issues in Pediatric Genetics: Views of
Geneticists, Parents and Primary Care Physicians
Dorothy C. Wertz*
I. Introduction
Medical genetics began as a pediatric specialty and remains so to a large
extent, in spite of new discoveries about the genetic components of disorders that
affect adults. In 1990, 41,053 (67%) of 61,368 general genetics clinic visits in the
United States where patient age was specified involved children under the age of
14.1 The majority of geneticists with M.D.'s, both in Canada (60%) and around the
world (50%), are pediatricians by training. Pediatricians who are not genetics
specialists serve as the gateway to genetic services and provide most of the follow-
up care. In the future, as genetics becomes part of general medicine, pediatricians
may take over many of the services now provided by genetics specialists. Pediatric
care and family reproductive counselling for at least one common genetic disorder,
cystic fibrosis, has long been the province of the pediatrician rather than the
geneticist.2
As pediatricians provide care for an increasing number of disorders that are
at least partly genetic in origin, they will face new ethical and social challenges.
Although most of the ethical issues in pediatric genetics also appear in general
pediatrics, genetics differs from general medicine in several important respects.
Genetics: 1) provides information predicting the future of persons who are now
healthy, including children who may develop genetic disorders or common
diseases, such as heart disease, in adulthood; 2) provides information that may
affect other blood relatives who share a gene; 3) provides unexpected, nonmedical
information such as nonpaternity; 4) has a history of nondirective counselling
that arises from its origins in reproductive counselling and concern about avoiding
the appearance of eugenics; and 5) is the only area of medicine with government-
.Dorothy Wertz is Senior Scientist, Social Science, Ethics and Law, The Eunice Kennedy Shriver
Center for Mental Retardation, Waltham, Massachusetts. This article was supported by contract NO1-
HD-l-3136 from the Mental Retardation and Developmental Disorders Branch of the National Institute
of Child Health and Human Development (National Institutes of Health) and by the Ethical, Legal and
Social Implications Branch of the National Human Genome Research Institute (National Institutes of
Health).
'Council of Regional Networks for Genetics Services (CORN) Minimum Data Set Report: 1990
(Berkeley, CA: CORN, 31 August 1992) at 36.
2D.C. Wertz, et al., Attitudes Toward Abortion Among Parents of Children with Cystic Fibrosis
(1991) Am. J. Puh]. Hlth. 992. See also D.C. Wertz et al., Attitudes Toward the Prenatal Diagnosis
of Cystic Fibrosis: Factors in Decision Making Among Affected Families (1992) Am. J. Hum. Genet.
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Ethical Issues in Pediatric Genetics: Views of Geneticists, Parents and Primary Care Physicians
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