“A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening

Abstract

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.

Societal implications of expanded universal carrier screening: a scoping review

“…Most articles were published after 2011. [ 2 , 3 , 5 , 9 , 10 , 13 , 14 , 20 , 21 , 25 – 31 , 33 , 35 , 36 , 38 – 41 , 43 – 55 , 58 ] Multiple article types were present in this selection, including primary data of quantitative survey studies [ 30 , 38 , 44 , 48 , 50 , 58 ] and qualitative studies, [ 2 , 6 , 29 , 39 , 46 , 49 , 51 – 55 ] a witness seminar [ 41 ], a workshop with experts [ 3 ], descriptions of previous screening offers or evaluations thereof [ 21 , 40 , 42 , 43 , 57 ], theoretical papers [ 4 , 7 , 13 , 14 , 20 , 27 , 28 , 31 , 32 , 34 , 35 , 45 , 47 ], literature reviews [ 10 , 33 , 36 , 56 ], an expert consensus paper [ 5 ], cost-effectiveness analyses [ 25 , 26 ] and a sociotechnical analysis [ 37 ].…”

“…About one third of participants perceived adverse societal implications, including slippery slope, discrimination and societal pressure. Matar [ 51 ] a 2019 Sweden Qualitative interview study with Swedish healthcare policymakers ( N = 10) To explore how healthcare policymaking experts perceive ethical and social aspects of preconception ECS. Expanded Participants believed that Sweden is currently not ready to implement ECS due to several ethical and social concerns, such as risks of stigmatization and discrimination, and potential long-term effects, such as a change of the public mind-set from tolerance and societal responsibility for the disabled to intolerance and attitudes of blame.…”

“…Empirical evidence that such implications occur is however scarce (Table 3 ). The potential negative effects related to medicalization listed were: (A) supply push of EUCS [ 2 , 14 , 39 , 40 , 44 , 46 , 50 ], (B) routinization of EUCS or its uncritical use [ 2 , 3 , 6 , 13 , 14 , 27 , 29 , 30 , 32 , 34 , 36 , 38 , 44 , 45 , 49 , 51 – 53 , 55 , 56 ] and (C) that EUCS may contribute to a societal climate where having less than ‘perfect children’ is regarded as problematic. [ 3 , 4 , 14 , 29 , 46 , 51 – 54 ] These subthemes are described in more detail below.…”

Addressing Health System Values in Health Technology Assessment: The Use of Evidence-Informed Deliberative Processes

“…The NT-Council is commissioned to make recommendations to the county councils regarding the use of new drug therapies. The county councils are highly autonomous and have a high degree of decision-making power for the introduction of new health technologies (19). Even though the county councils have to adhere to the principles of the ethical platform, this situation runs the risk of using the principles differently as described in a study on the county council of Stockholm (20).…”

Health practitioners' perceptions of the barriers and enablers to the implementation of reproductive genetic carrier screening: A systematic review

“…To date, attention in the literature has centred on the attitudes of patients and families of those affected by genetic conditions, [3][4][5] hypothetical views of HCPs on whether screening should be offered 6 and the cost effectiveness of RGCS. 7,8 While these elements are important, they do not inform us about how to implement a RGCS programme.…”