Three factors are combining to complicate the ethics and the law of genetic
counseling. The first is the tightening of restrictions on abortion. Great
advances have been made in postconception genetic testing, but the objective
of most of these determinations is to allow the patient to make an informed
choice of an abortion. The second is the publicity surrounding the human
genome project. Although this project only extends existing work on mapping
and identifying the chromosomal basis for hereditary traits and diseases, it has
gotten extensive publicity. This is partly because the federal research grant
funding this project allocates several million dollars a year for legal and ethical
research. This money has created an industry of conferences and articles on
the potential societal problems of doing genetic research and has fueled both
unreasonable fears and expectations. [Beckwith J. The human genome
initiative: genetics’ lightning rod.
Am J Law Med. 1991;17:1.]
The third factor is a backlash to the medicalization of pregnancy. A primary
manifestation of this backlash is the willingness of women to sue their
physicians if their baby is born with a defect. Many women interpret the
marketing of obstetric services as a guarantee of a healthy baby, and
physicians reinforce this message by implying that women who do not follow
their recommendations have a greater chance of having a defective baby than
women who do what their physicians recommend. This factor is complicated
for genetic counseling because society is ambivalent about the proper goals of
such counseling. In one author’s view, there are three overlapping and
conflicting models for genetic counseling: “1) as an assembly line approach to
the products of conception, separating out those products we wish to develop
from those we wish to discontinue; 2) as a way to give women control over
their pregnancies, respecting (increasing) their autonomy to choose the kinds
of children they will bear; or 3) as a means of reassuring women that enhances
their experience of pregnancy.” [Lippman A. Prenatal genetic testing and
screening: Constructing needs and reinforcing inequities.
Am J Law Med. 1991;17:15.]
Conflicts over genetic counseling and obstetric care span the political spectrum.
Conservative religious groups object to abortion, whereas some radical
feminist groups decry high-technology obstetric care as a conspiracy against
women. The stakes are high. Few states provide high-quality community care
to reduce the burden on families with mentally handicapped children. Financial
necessity requires that both parents work outside the home in most families,
complicating the care of disabled children. The chance of children with mental
disabilities finding productive work and some level of independence becomes
more problematic as American society shifts from a labor- based economy to
an information-based economy, although this can help individuals with physical
disabilities.
These factors combine to pressure women to strive for the perfect baby, while
at the same time creating a sense of guilt for not treating pregnancy as a
natural, nonmedical condition. This conflict can take the form of denial and the
refusal of indicated testing or a hypersensitivity to risk and the aborting of
fetuses with a fair probability of normal development. Physicians must be
sensitive to both of these reactions, while carefully documenting the
information provided and raising the issue at more than one encounter so that
the woman has an opportunity to reconsider her decisions.