REBECCA BENNETT
ANTENATAL GENETIC TESTING AND
THE RIGHT TO REMAIN IN IGNORANCE
ABSTRACT. As knowledge increases about the human genome, prenatal genetic testing
will become cheaper, safer and more comprehensive. It is likely that there will be a great
deal of support for making prenatal testing for a wide range of genetic disorders a routine
part of antenatal care. Such routine testing is necessarily coercive in nature and does not
involve the same standard of consent as is required in other health care settings. This paper
asks whether this level of coercion is ethically justifiable in this case, or whether pregnant
women have a right to remain in ignorance of the genetic make-up of the fetus they are
carrying. While information gained by genetic testing may be useful for pregnant women
when making decisions about their pregnancy, it does not prevent harm to future children.
It is argued that as this kind of testing provides information in the interests of the pregnant
women and not in the interests of any future child, the same standards of consent that are
normally required for genetic testing should be required in this instance.
KEY WORDS: autonomy, consent, coercion, harm, prenatal genetic testing
It is generally accepted that competent individuals should be allowed to
choose whether or not to have diagnostic tests especially those that may
indicate potentially serious conditions. While there may be temptations
on the part of the health professionals to test for conditions without the
explicit informed consent of patients, such temptations are usually deemed
unacceptably paternalistic [1]. It is normally assumed that the decision to
undergo diagnostic tests particularly those for genetic disorders or diseases
with serious consequences should be a fully informed, freely chosen, care-
fully considered one. The Nuffield Council on Bioethics, for instance, not
only recommends that “adequately informed consent should be a require-
ment for all genetic screening programmes” [2] (a process that should
include extensive counselling), but also that the “[t]he voluntary nature
of the screening process must be emphasised” [2, para. 4.29]. The General
Medicine Council also stress the importance of informed consent for any
diagnostic test emphasising that “[s]ome conditions, such as HIV, have
serious social and financial, as well as medical, implications. In such cases
you must make sure that the patient is given appropriate information about
the implications of the test, and appropriate time to consider and discuss
them.”
1
Theoretical Medicine 22: 461–471, 2001.
© 2001 Kluwer Academic Publishers. Printed in the Netherlands.