title: Foetal surgery and using in utero therapies to reduce the degree of disability after birth. Could it be morally defensible or even morally required?
abstract: In 2008 the Human Fertilisation and Embryology Act amendments made deliberately choosing to bring disability into the world, using assisted reproduction, a criminal offence. This paper considers whether the legal prohibition above, should influence other policy areas concerning the welfare of future children such as new possibilities presented by foetal surgery and in utero gene therapy. If we have legal duties to avoid disability in one context should this influence our avoidance of disability in this other context? This paper investigates whether the State might have a stake in wider promotion of practices to reduce the degree of disability in foetuses that will come to exist (as opposed to those that will be aborted). Not selecting for disability does not affect the welfare of any future individual, whereas treating in utero abnormalities can optimize the eventual child's welfare; antenatal interventions stand to improve clinical outcomes and welfare should that specific child be born. I explore why the State may want to intervene in the antenatal setting and to what extent, if at all; the State should implement these technologies. I argue that if the State is justified in intervening to outlaw the choosing to create disabled lives using assisted reproductive techniques, it is also justified in putting pressure on prospective parents to accept therapies in utero to help their child be born less disabled. However, I qualify this with the argument that the State is not justified in using force or the criminal law in this situation during pregnancy.
authors.affiliation: Paediatric Intensive Care Unit, Royal Manchester Children's Hospital, Manchester, UK. ckanaris@doctors.net.uk.|The Centre for Social Ethics and Policy, School of Law, University of Manchester, Manchester, UK. ckanaris@doctors.net.uk.
authors.forename: Constantinos
authors.identifier: http://orcid.org/0000-0002-4017-4553
authors.initials: C
authors.lastname: Kanaris
mesh_terms: D002648:Child; D002669:Child Welfare / Q000331:legislation & jurisprudence; D006233:Persons with Disabilities; D005260:Female; D005315:Fetal Diseases / Q000175:diagnosis / Q000601:surgery* / Q000628:therapy; D005333:Fetus / Q000601:surgery; D006806:Human Rights / Q000331:legislation & jurisprudence; D006801:Humans; D007231:Infant, Newborn; D007232:Infant, Newborn, Diseases / Q000517:prevention & control; D011247:Pregnancy; D011296:Prenatal Diagnosis; D018570:Risk Assessment; D006113:United Kingdom; D014481:United States
keywords: Advanced reproductive technologies; Disability; Disability rights; Foetal rights; Foetal surgery; Foetal therapy; Genetic screening; Genetics; Human enhancement; In utero gene therapy; Parental; Pregnancy; Public healthcare policy; Responsibility