The ‘serious’ factor in germline modification

Journal of Medical Ethics 45 (8):508-513 (2019)
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Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy and may someday correct faulty genes responsible for heritable diseases in the embryo ). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism and constructivism. The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies.



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Health as a Theoretical Concept.Christopher Boorse - 1977 - Philosophy of Science 44 (4):542-573.
A Second Rebuttal On Health.Christopher Boorse - 2014 - Journal of Medicine and Philosophy 39 (6):683-724.
Normal Functioning and the Treatment-Enhancement Distinction.Norman Daniels - 2000 - Cambridge Quarterly of Healthcare Ethics 9 (3):309--322.

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