What choices should we be able to make about designer babies? A Citizens' Jury of young people in South Wales

• Published in: Health expectations : an international journal of public participation in health care and health policy 2006-09, Vol.9 (3), p.207-217
• Main Authors: Iredale, Rachel, Longley, Marcus, Thomas, Christian, Shaw, Anita
• Format: Article
• Language: English
• Subjects: Acceptability; Adolescent; Adult; Babies; Child sex preferences; Choice Behavior; Citizen's Jury; Citizens' Jury; Court decisions; Decision making; Embryology; Eugenics; Expert witness testimony; Expert witnesses; Female; Fertilization; Gene therapy; Genetic engineering; Genetic testing; Genetics; Health services; Home economics; Humans; Infants; Juries; Jurors; Male; Medical ethics; Parents; Permission; Public Opinion; Public policy; reproduction; Reproductive technologies; Science; Sex; Sex Preselection; Siblings; Social sciences; Society; Suitability; Technology; Wales; Witnesses; Young adults; Young people; Youth
• ISSN: 1369-6513; 1369-7625
• DOI: 10.1111/j.1369-7625.2006.00387.x

Background  Young people will increasingly have the option of using new technologies for reproductive decision making but their voices are rarely heard in debates about acceptable public policy in this area. Capturing the views of young people about potentially esoteric topics, such as genetics, is difficult and methodologically challenging. Design  A Citizens’ Jury is a deliberative process that presents a question to a group of ordinary people, allows them to examine evidence given by expert witnesses and personal testimonies and arrive at a verdict. This Citizens’ Jury explored designer babies in relation to inherited conditions, saviour siblings and sex selection with young people. Participants  Fourteen young people aged 16–19 in Wales. Results  Acceptance of designer baby technology was purpose‐specific; it was perceived by participants to be acceptable for preventing inherited conditions and to create a child to save a sibling, but was not recommended for sex selection. Jurors stated that permission should not depend on parents’ age, although some measure of suitability should be assessed. Preventing potential parents from going abroad was considered impractical. These young people felt the Human Fertilisation and Embryology Authority should have members under 20 and that the term ‘designer baby’ was not useful. Conclusions  Perspectives on the acceptability of this technology were nuanced, and based on implicit value judgements about the extent of individual benefit derived. Young people have valuable and interesting contributions to make to the debate about genetics and reproductive decision making and a variety of innovative methods must be used to secure their involvement in decision‐making processes.