In the context of population screening
technologies, the identification of risk has potentially huge implications for the
possible creation of risky populations. Following the notions of the ‘clinical ice-
berg’ (Last, 1963) and the ‘symptom iceberg’ (Hannay, 1979), we conceptualise
the emergence of genetically risky subjects as the creation of a potential
genetic
iceberg
. That is to say there is a pyramid of potential pathology (or potential
future manifestation of disease) that lies beneath t…
Read moreIn the context of population screening
technologies, the identification of risk has potentially huge implications for the
possible creation of risky populations. Following the notions of the ‘clinical ice-
berg’ (Last, 1963) and the ‘symptom iceberg’ (Hannay, 1979), we conceptualise
the emergence of genetically risky subjects as the creation of a potential
genetic
iceberg
. That is to say there is a pyramid of potential pathology (or potential
future manifestation of disease) that lies beneath the relatively small numbers
of people currently dealt with by clinical genetic services. This is not on
account of an existing disease burden due to genetic causes, but rather because
the criteria used to capture and define genotypic and phenotypic individuals at ‘risk’ is malleable – allowing for relocation of boundaries to include or exclude
individuals or population groups from active screening. Such decisions we
argue are centrally entrenched in the political calculus of health planning.
They are informed by issues of resource availability and allocation, as well as by
‘science’, and the boundaries of ethical and practical decision making. The
chapter explains how, in the context of genetic medicine, populations get
categorised and how their screening, surveillance and therapeutic interven-
tions get prioritised. There is, moreover, an iceberg of potential anxiety and
uncertainty on the part of those identified as being at low to moderate risk,
who are not allocated to active healthcare management (because their risks are
comparatively low, in comparison with high-priority categories). The
expansion of genetic testing may therefore create an unmet need for medical
monitoring, counselling or – at least – reassurance.