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The 'serious' factor in germline modification.

Abstract

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 (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). 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 (ie, based on biological facts) and constructivism (ie, based on human values). 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 (eg, right to science and right to the highest attainable health) 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.

Authors+Show Affiliations

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montreal, Quebec, Canada.Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31326898

Citation

Kleiderman, Erika, et al. "The 'serious' Factor in Germline Modification." Journal of Medical Ethics, 2019.
Kleiderman E, Ravitsky V, Knoppers BM. The 'serious' factor in germline modification. J Med Ethics. 2019.
Kleiderman, E., Ravitsky, V., & Knoppers, B. M. (2019). The 'serious' factor in germline modification. Journal of Medical Ethics, doi:10.1136/medethics-2019-105436.
Kleiderman E, Ravitsky V, Knoppers BM. The 'serious' Factor in Germline Modification. J Med Ethics. 2019 Jul 20; PubMed PMID: 31326898.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - The 'serious' factor in germline modification. AU - Kleiderman,Erika, AU - Ravitsky,Vardit, AU - Knoppers,Bartha Maria, Y1 - 2019/07/20/ PY - 2019/02/27/received PY - 2019/06/12/revised PY - 2019/06/28/accepted PY - 2019/7/22/entrez PY - 2019/7/22/pubmed PY - 2019/7/22/medline KW - concept of health KW - ethics KW - gene therapy/transfer KW - genethics KW - genetic engineering JF - Journal of medical ethics JO - J Med Ethics N2 - 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 (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). 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 (ie, based on biological facts) and constructivism (ie, based on human values). 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 (eg, right to science and right to the highest attainable health) 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. SN - 1473-4257 UR - https://www.unboundmedicine.com/medline/citation/31326898/The_'serious'_factor_in_germline_modification L2 - http://jme.bmj.com/cgi/pmidlookup?view=long&pmid=31326898 DB - PRIME DP - Unbound Medicine ER -