Whole genome sequencing is
quickly becoming more affordable and accessible, with the prospect of personal
genome sequencing for under $1,000 now widely said to be in sight. The ethical
issues raised by the use of this technology in the research context have
received some significant attention, but little has been written on its use in
the clinical context, and most of this analysis has been futuristic
forecasting. This is problematic, given the speed with which whole genome
sequencing technology is likely to be incorporated into clinical care. This
paper explores one particular subset of these issues: the implications of
adopting this technology in the prenatal context without a good understanding
of when and how it is useful.
Prenatal whole genome sequencing differs from current
prenatal genetic testing practice in a number of ethically relevant ways. Most
notably, whole genome sequencing would radically increase the volume and scope
of available prenatal genetic data. The wealth of new data could enhance
reproductive decision-making, promoting parents’ freedom to make well-informed
reproductive decisions. We argue, however, that there is potential for prenatal
whole genome sequencing to alter clinical practice in undesirable ways,
especially in the short term. We are concerned that the technology could (1)
change the norms and expectations of pregnancy in ways that complicate parental
autonomy and informed decision-making, (2) exacerbate the deleterious role that
genetic determinism plays in child rearing, and (3) undermine children’s future
autonomy by removing the option of not knowing their genetic information
without appropriate justification.
Whole genome sequencing is
quickly becoming more affordable and accessible, with the prospect of personal
genome sequencing for under $1,000 now widely said to be in sight. The ethical
issues raised by the use of this technology in the research context have
received some significant attention, but little has been written on its use in
the clinical context, and most of this analysis has been futuristic
forecasting. This is problematic, given the speed with which whole genome
sequencing technology is likely to be incorporated into clinical care. This
paper explores one particular subset of these issues: the implications of
adopting this technology in the prenatal context without a good understanding
of when and how it is useful.
Prenatal whole genome sequencing differs from current
prenatal genetic testing practice in a number of ethically relevant ways. Most
notably, whole genome sequencing would radically increase the volume and scope
of available prenatal genetic data. The wealth of new data could enhance
reproductive decision-making, promoting parents’ freedom to make well-informed
reproductive decisions. We argue, however, that there is potential for prenatal
whole genome sequencing to alter clinical practice in undesirable ways,
especially in the short term. We are concerned that the technology could (1)
change the norms and expectations of pregnancy in ways that complicate parental
autonomy and informed decision-making, (2) exacerbate the deleterious role that
genetic determinism plays in child rearing, and (3) undermine children’s future
autonomy by removing the option of not knowing their genetic information
without appropriate justification.