Your article and editorial about screening for haemoglobinopathies in primary care failed, to my mind, to make it sufficiently clear that we are not talking here about screening for a disease with a view to treatment.1,2 Rather you are talking here about screening a fetus with a view to possible termination. Clearly, we have among our population people with very different ideas about the ethics of termination. It remains, however, quite different from treatment in its usually understood sense.
The ethical debate cannot be summarised here, but seems to hinge on what we believe the rights of the fetus to be, whether equivalent to those of an adult human being, or in some way less extensive.3 Many communities in which haemoglobinopathies are common have been associated with faiths that do not find termination acceptable. For this reason informed consent from the mother for these tests must make it clear what these tests may lead to. Her beliefs must be respected even if this is expensive for society.
A final question to ponder is the message these screening programs give to those many individuals in our society who live with one of these haemoglobinopathies. The point has been eloquently put by the sociologist Shakespeare that a policy of termination of disabled fetuses gives the disabled in the community a strong, if unintended, message that they are not valued.4
REFERENCES
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