Carrier testing of adults provides information about the risk of
passing a genetic mutation to your children, leading to
reproductive (and some say, eugenic) decisions. Excessive carrier
screening may have adverse effects, but it can also prevent
suffering and open up new reproductive options. Raz's study focuses
on the interplay of community genetics (the medical organisation of
carrier screening) and genetic alliances (networks of individuals
at risk), exploring how 'genetic communities' are emerging both
within existing ethnic groups and around patients'
organizations.
While the interplay between carrier testing, reproduction and
eugenics has sparked many discussions, this study provides a novel
and much-needed perspective on its actual implementation and
interpretation by community members. Conflating a cross-cultural
spectrum of genetic communities, the benefits and perils of
supporting (or restricting) carrier screening are located within
broader social issues such as religion, ethnicity,
multi-culturalism, abortion, stigmatization, suffering and
care-giving. While carrier screening emerges as ultimately a
morally justified pronatalist endeavour for the reduction of
suffering, thus being different in principle from the 'old'
eugenics, it can also carry unintended adverse consequences if left
unattended to consumers, communities, or health professionals.
General
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