Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
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Journal of Medical Ethics 38 (9):519-524 (2012)
Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed
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Ellen Clayton, Laurence Mccullough, Leslie Biesecker, Steven Joffe & Lainie Ross (2014). Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children. American Journal of Bioethics 14 (3):3-9.
Suli Sui & Margaret Sleeboom-Faulkner (2015). Commercial Genetic Testing and its Governance in Chinese Society. Minerva 53 (3):215-234.
N. Hallowell, S. Chowdhury, A. E. Hall, P. Pharoah, H. Burton & N. Pashayan (2014). What Ethical and Legal Principles Should Guide the Genotyping of Children as Part of a Personalised Screening Programme for Common Cancer? Journal of Medical Ethics 40 (3):163-167.
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