12
Ethical and social aspects of evaluating
fetal screening
Elina Hemminki
National Research and Development Centre for Health and Welfare (STAKES), Helsinki, Finland
Introduction
A current doctrine in medicine is that health care should be evidence-based,
and an important tool of evidence-based medicine is health technology
assessment (HTA). A typical textbook deWnition of HTA is that it includes
studying the health, economic, social and ethical consequences of a health
technology in a way that helps in deciding on its use. Health aspects include
intended consequences, eYcacy and eVectiveness, as well as unintended
consequences, adverse eVects and side eVects. Some commentators would
also include in HTA the study of factors that inXuence the use of a health
technology.
SpeciWc to HTA is its aim of integrating knowledge of diVerent aspects of a
technology, in order to provide a full evaluation to help decision-makers. In
practice, however, ethical and social aspects, if studied at all, have not been
integrated into the HTA process. One reason for this is the diYculty of
combining ethical and social aspects with other outcomes. To aggregate
various factors in health, several methods have been created, including
quality-adjusted life-years. To combine health and cost data, cost-eVective-
ness, cost beneWt and other such methods have been developed. But there is
no quantitative method by which to measure ethical and social consequences.
Thus, they are treated as separate issues, and often added as a footnote or
afterthought when an evaluation of a health technology has already been
made.
The purpose of this chapter is to illustrate the importance of the integra-
tion of ethical and social consequences in HTA, using fetal screening as an
example. Fetal screening is loaded with ethical and social consequences and
determinants, such as views on reproduction, fetal rights, the value of

because of their genetic makeup or other characteristics. It may also reinforce
the current view of reproduction – children are not born, they are made. Fetal
screening will also aVect the view of pregnancy as being unreal until the
quality of the fetus is guaranteed (‘tentative pregnancy’ as formulated by
Rothman, 1987) and attachment to the fetus may be weakened. Whether it
has any impact on the subsequent mother–infant relationship is unknown.
Fetal screening will inXuence a fetus’s status – a sick fetus is not a real fetus,
but something less valuable. Although it may not aVect existing children with
disabilities, this value judgement may in the long run create a more negative
view about people with disabilities. People with disabilities, at least, some-
times interpret fetal screening as a value judgement of them. Currently it is
emphasized that fetal screening is a way to give the mother/parents an
opportunity to avoid having a handicapped or ill child. But this slant might
easily be changed to emphasize the health of the newborn population, public
health or the health level of a given society. And then we would have to face
the dilemma of eugenics.
184 E. Hemminki
worry about one’s worthiness
nature of reproduction
fetus position
attachment to the fetus
views of disabled people
veiws on reproduction eugenics
Existence
worry
attachment to the fetus
physical harm
Doing the test
False positives
False negatives

185Ethical and social aspects of evaluating fetal screening
positives are false positives) and because the diagnosis, usually by amniocent-
esis, takes weeks, there is a great deal of well-documented stress for the
pregnant woman and her partner (Santalahti et al., 1996). This worry may
make the couple’s lives miserable and may negatively aVect the pregnancy
experience, with ongoing ramiWcations for family relationships and subse-
quent pregnancies.
False negatives (when the fetus has the condition but it is not detected by
the screening test) may lead to disappointment – the mother/parents falsely
assume the child to be normal, and they may be totally unprepared at the
birth. How this phenomenon aVects their relationship with the handicapped
child is unknown. They may feel guilty, or deceived by the medical profes-
sion, because they tried to avoid the birth of an aVected child but failed.
In the case of true positives (when the condition is deWnitely conWrmed
from the screening test or in a diagnostic test) the option of termination,
often at late gestation, has to be faced. Finding a defective fetus and aborting
it avoids the birth of a disabled infant, which is the purpose and the positive
side of screening. But late abortion may be psychologically diYcult. Late
abortions on grounds of fetal abnormality may also inXuence society’s view
of disability, fetuses and pregnancies. If the mother decides to continue the
pregnancy regardless of fetal abnormalities, the parents take the responsibil-
ity. They may, both in their own eyes and that of others and society, feel that
they have to bear the consequences, however diYcult their lives are. This
outcome was their choice; it did not merely happen to them.
There also may be mid-level consequences for health care providers. Fetal
screening may have consequences for resource utilization in antenatal care.
Because screening tests may require special skills and technology, they may
have a notable impact on the place of antenatal care and type of personnel
needed (Hemminki et al., 1999).
Special features of fetal screening

to know. Knowledge that a certain defect had led a woman to abort the fetus
is especially hard for those who have the same defect. They may think that
they also should have been aborted. On a societal level this question may
bother handicapped people in general – if the birth of people like themselves
is not wanted, they may think that they are not wanted either.
The fourth special feature of fetal screening, diVerentiating it from other
antenatal screening procedures, is its possible relation to eugenic ideology.
Eugenics was prominent in the western world early in the twentieth century,
but is a source of shame today because of its connection to fascist politics and
nationalistic and racist movements (Hemminki et al., 1997a). Before the
technology for fetal screening was available, the reproduction of people
assumed to have unwanted hereditary characteristics was regulated either
through isolation in institutions, marriage prohibitions, sterilizations and
other pregnancy prevention methods, or through unselective abortions if an
aVected woman got pregnant. In a 1997 survey, Finnish physicians were
asked whether they believed that current fetal screening is based on eugenic
thinking. A Wfth of the physicians agreed that it was so, in whole or in part;
about half said it was not; and most of the other respondents either could not
say or chose the option, ‘I do not know what eugenics is and cannot make a
comparison’ (Hemminki et al., 2000). Those physicians who agreed that fetal
screening was not linked to eugenics based their opinion on the intention and
voluntariness of screening, focusing on improvement of a race versus de-
creasing suVering among individuals.
Fetal screening is based on certain values and beliefs, such as the import-
ance of health, the feeling that a handicapped child is worse than none at all
(particularly if there is an option of having a chance to try again) and the
perception that handicaps cause suVering to the child itself, the parents
187Ethical and social aspects of evaluating fetal screening