"A perfect society" : Swedish policymakers' ethical and social views on preconception expanded carrier screening
Keywords
PreconceptionExpanded carrier screening
Genetic
Policymakers
Reproductive decision-making
Ethics
Social effects
Other Medical Biotechnology
Annan medicinsk bioteknologi
Other Health Sciences
Annan hälsovetenskap
Medical Ethics
Medicinsk etik
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http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-362390Abstract
To improve healthcare policymaking, commentators have recommended the use of evidence, health technology assessment, priority setting, and public engagement in the process of policymaking. Preconception expanded carrier screening, according to the World Health Organization’s definition, is a novel health technology and therefore warrants assessment, part of which involves evaluating ethical and social implications. We examined ten Swedish policymakers’ perspectives on ethical and social aspects of preconception expanded screening through in-depth expert interviewing, using a semi-structured questionnaire. Respondents were affiliated to governmental and non-governmental institutions that directly influence healthcare policymaking in Sweden. The interviews were recorded, transcribed verbatim, and analyzed via inductive thematic analysis method, which generated seven themes and several subthemes. Policymakers harbored concerns regarding the economics, Swedish and international political respects, implementation procedures, and societal effects, which included long-term ones. Moreover, participants detailed the role of public engagement, research, and responsibility in regard to preconception expanded carrier screening implementation. Since this is a qualitative study, with a small non-random sample, the results may not be generalizable to all policymakers in Sweden. However, the results give a profound insight into the process and interpretative knowledge of experts, in the Swedish milieu and the extent of readiness of Sweden to implement a preconception expanded carrier screening program.Date
2019Type
Article in journalIdentifier
oai:DiVA.org:uu-362390http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-362390
doi:10.1007/s12687-018-0389-x
PMID 30259298
ISI:000463053900011
DOI
10.1007/s12687-018-0389-xCopyright/License
info:eu-repo/semantics/openAccessae974a485f413a2113503eed53cd6c53
10.1007/s12687-018-0389-x