title: For your interest? The ethical acceptability of using non-invasive prenatal testing to test 'purely for information'.
abstract: Non-invasive prenatal testing (NIPT) is an emerging form of prenatal genetic testing that provides information about the genetic constitution of a foetus without the risk of pregnancy loss as a direct result of the test procedure. As with other prenatal tests, information from NIPT can help to make a decision about termination of pregnancy, plan contingencies for birth or prepare parents to raise a child with a genetic condition. NIPT can also be used by women and couples to test purely 'for information'. Here, no particular action is envisaged following the test; it is motivated entirely by an interest in the result. The fact that NIPT can be performed without posing a risk to the pregnancy could give rise to an increase in such requests. In this paper, we examine the ethical aspects of using NIPT 'purely for information', including the competing interests of the prospective parents and the future child, and the acceptability of testing for 'frivolous' reasons. Drawing on several clinical scenarios, we claim that arguments about testing children for genetic conditions are relevant to this debate. In addition, we raise ethical concerns over the potential for objectification of the child. We conclude that, in most cases, using NIPT to test for adult-onset conditions, carrier status or non-serious traits presenting in childhood would be unacceptable.
authors.forename: Zuzana
authors.initials: Z
authors.lastname: Deans
authors.forename: Angus J
authors.initials: AJ
authors.lastname: Clarke
authors.forename: Ainsley J
authors.initials: AJ
authors.lastname: Newson
mesh_terms: D000328:Adult; D017668:Age of Onset; D020811:Biomedical Technology / Q000941:ethics / Q000379:methods / Q000639:trends; D002648:Child; D002755:Choice Behavior / Q000941:ethics; D000013:Congenital Abnormalities / Q000175:diagnosis* / Q000235:genetics; D003657:Decision Making / Q000941:ethics*; D034462:Dissent and Disputes; D005260:Female; D005333:Fetus; D030661:Genetic Privacy / Q000941:ethics; D005820:Genetic Testing / Q000941:ethics / Q000379:methods / Q000639:trends; D015894:Genome, Human; D006579:Heterozygote; D006801:Humans; D057226:Information Seeking Behavior / Q000941:ethics*; D008297:Male; D009014:Morals; D009042:Motivation; D010290:Parents / Q000523:psychology; D010342:Patient Acceptance of Health Care / Q000523:psychology; D011247:Pregnancy; D037841:Pregnant People / Q000523:psychology; D011296:Prenatal Diagnosis / Q000009:adverse effects / Q000941:ethics / Q000379:methods / Q000523:psychology / Q000639:trends; D043762:Reproductive Behavior / Q000941:ethics; D012732:Sex Determination Analysis / Q000941:ethics
keywords: children; ethics; genetic testing; non-invasive prenatal testing; prenatal diagnosis