title: Nurses' views of longitudinal genetic screening of and research on children.
abstract: There is a lack of empirical data exploring ethical issues of genetic screening and longitudinal research involving children. Therefore, this pilot interview study explored the perceptions of nurses and midwives in relation to their involvement in an ongoing genetic preventive screening process involving children - the All Babies in South-east Sweden (ABIS) study (n=17,005). Data were collected through semistructured interviews with 10 nurses involved in all information and sampling procedures. While providing the preliminary nature of this study, it supports the idea of the importance of further research, both from a nursing professional perspective and from other parties involved in clinical research. The findings made in this study suggest that for such studies it is vital that nurses and midwives are fully informed about aims, methods, and potential intervention/prevention since in many cases they have a central role in several areas of screening and clinical longitudinal research involving children, e.g. information to potential research participants, obtaining informed consent, and data collection. With a thorough understanding of the research, including both basic aims and methods as well as potential future prevention aims, the nursing staff involved will be better placed to help participants make an informed choice and to provide additional information to the participants. Further research may be needed that aims to develop effective methods in preparing data collectors. It is also suggested that the design of the information process, and especially in longitudinal research involving young children, is of utmost importance before such studies are commenced.
authors.affiliation: Faculty of Health Sciences, Linköping University, Sweden.
authors.forename: Ulrica
authors.initials: U
authors.lastname: Gustafsson Stolt
authors.forename: Per-Erik
authors.initials: PE
authors.lastname: Liss
authors.forename: Johnny
authors.initials: J
authors.lastname: Ludvigsson
mesh_terms: D001291:Attitude of Health Personnel; D002648:Child; D002669:Child Welfare / Q000941:ethics*; D004993:Ethics, Nursing; D036281:Genetic Research / Q000941:ethics*; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D007231:Infant, Newborn; D008137:Longitudinal Studies; D008880:Midwifery; D009726:Nurses; D010865:Pilot Projects; D013548:Sweden