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

Abels G, Behrens M (2009) Interviewing experts in political science: a reflection on gender and policy effects based on secondary analysis. In: Interviewing experts. Springer, pp 138–156 Benn P, Chapman AR, Erickson K, DeFrancesco MS, Wilkins-Haug L, Egan JF, Schulkin J (2014) Obstetricians and gynecologists’ practice and opinions of expanded carrier testing and noninvasive prenatal testing. Prenat Diagn 34:145–152 Bogner A, Menz W (2009) The theory-generating expert interview: epistemological interest, forms of knowledge, interaction. In: Bogner A, Littig B, Menz W (eds) Interviewing experts. Palgrave Macmillan UK, London, pp 43–80. https://doi.org/10.1057/9780230244276_3 Brownson RC, Chriqui JF, Stamatakis KA (2009) Understanding evidence-based public health policy. Am J Public Health 99:1576–1583 Carlsson P (2004) Health technology assessment and priority setting for health policy in Sweden. Int J Technol Assess Health Care 20:44–54 Choi BC, Pang T, Lin V, Puska P, Sherman G, Goddard M, Ackland MJ, Sainsbury P, Stachenko S, Morrison H, Clottey C (2005) Can scientists and policy makers work together? J Epidemiol Community Health 59:632–637 Clinical Studies Sweden C (2017) Swedish healthcare system. https://www.kliniskastudier.se/english/swedenresearchcountry/swedishhealthcaresystem.4.4b7fd4815f60023c4d83a.html. Accessed 21 March 2018 De Wert GM, Dondorp WJ, Knoppers BM (2012) Preconception care and genetic risk: ethical issues. Journal of Community Genetics 3:221–228 Easton D (1953) The political system. Alfred A. Knopf, New York Edwards JG, Feldman G, Goldberg J, Gregg AR, Norton ME, Rose NC, Schneider A, Stoll K, Wapner R, Watson MS (2015) Expanded carrier screening in reproductive medicine—points to consider: a joint statement of the American College of Medical Genetics and Genomics, American College of Obstetricians and Gynecologists, National Society of Genetic Counselors, Perinatal Quality Foundation, and Society for Maternal-Fetal Medicine. Obstet Gynecol 125:653–662 Fredriksson M, Tritter JQ (2017) Disentangling patient and public involvement in healthcare decisions: why the difference matters. Sociology of Health & Illness 39:95–111 Garpenby P, Nedlund A-C (2016) Political strategies in difficult times—the “backstage” experience of Swedish politicians on formal priority setting in healthcare. Soc Sci Med 163:63–70. https://doi.org/10.1016/j.socscimed.2016.06.046 General Assembly of the World Medical Association (2014) World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. J Am Coll Dent 81:14 Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24:105–112 Hanney SR, Gonzalez-Block MA, Buxton MJ, Kogan M (2003) The utilisation of health research in policy-making: concepts, examples and methods of assessment. Health Research Policy and Systems 1:2 Henneman L, Borry P, Chokoshvili D, Cornel MC, van El CG, Forzano F, Hall A, Howard HC, Janssens S, Kayserili H, Lakeman P, Lucassen A, Metcalfe SA, Vidmar L, de Wert G, Dondorp WJ, Peterlin B (2016) Responsible implementation of expanded carrier screening. Eur J Hum Genet 24(6):e1–e12 Höglund AT, Falkenström E (2018) The status of ethics in Swedish health care management: a qualitative study. BMC Health Serv Res 18:608 Holtkamp KC, Vos EM, Rigter T, Lakeman P, Henneman L, Cornel MC (2017) Stakeholder perspectives on the implementation of genetic carrier screening in a changing landscape. BMC Health Serv Res 17:146 Kenny N, Giacomini M (2005) Wanted: a new ethics field for health policy analysis. Health Care Anal 13:247–260 Kenny N, Joffres C (2008) An ethical analysis of international health priority-setting. Health Care Anal 16:145–160 Lappé M, Gustafson JM, Roblin R (1972) Ethical and social issues in screening for genetic disease. N Engl J Med 286:1129–1132 Lazarin GA, Haque IS (2016) Expanded carrier screening: a review of early implementation and literature. In: Seminars in perinatology,. vol 1. Elsevier, pp 29–34, 40 Lewis R (2008) A brief history of genetic testing. Sci Prog http://scienceprogress.org/2008/05/a-brief-history-of-genetic-testing/. Accessed 27 Nov 2015 Matar A, Kihlbom U, Höglund AT (2016) Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS)—a qualitative study. Journal of Community Genetics 7:203–214. https://doi.org/10.1007/s12687-016-0268-2 McQueen DV (2001) Strengthening the evidence base for health promotion. Health Promot Int 16:261–268 Ministry of Education and Cultural Affairs (2003) The act concerning the ethical review of research involving humans (2003:460). In: The ethical Review Act. http://www.epn.se/media/1205/the_ethical_review_act.pdf 2015. Accessed 5 June 2018 Ministry of Social Affairs (2017) Hälso- och sjukvårdslag (Healthcare Act). 2017: 30. M. o. S. Affairs. Sweden,Swedish Government Offices. SFS 2017:30 Nature.com (2018) Health policy. Naure.com. https://www.nature.com/subjects/health-policy Accessed 22 March 2018 Plantinga M, Birnie E, Abbott KM, Sinke RJ, Lucassen AM, Schuurmans J, Kaplan S, Verkerk MA, Ranchor AV, van Langen IM (2016) Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases. Eur J Hum Genet 24:1417–1423 Press N (2008) Genetic testing and screening. The Hastings Center NY, Garrison NY Ready K, Haque IS, Srinivasan BS, Marshall JR (2012) Knowledge and attitudes regarding expanded genetic carrier screening among women’s healthcare providers. Fertil Steril 97:407–413 Ryan GW, Russell Bernard H (2003) Techniques to identify themes. Field Methods 15(1):85–109 Scully JL (2008) Disability and genetics in the era of genomic medicine. Nat Rev Genet 9:797–802 Socialdepartementet S (2018) Statens medicinsk-etiska råd: om Smer. Statens medicinsk-etiska råd http://www.smer.se/about-us/. Accessed 31 May 2018 Socialstyrelsen S (2018) About the National Board of Health and Welfare. http://www.socialstyrelsen.se/english/aboutus Accessed 1st June 2018 Strömbäck J (2013) Future challenges for Sweden. Final report of the commission on the future of Sweden. Fritzes, Stockholm Svenska Läkaresällskapet S (2018) Om Svenska Läkaresällskapet http://www.sls.se/om-oss/om-oss/. Accessed 1st June 2018 Sveriges Läkarförbund S (2016) Swedish Medical Association https://www.slf.se/Info-in-English/Swedish-Medical-Association/. Accessed 1st June 2018 Swedish Agency for Health Technology Assessment and Assessment of Social Services (2018) About SBU. SBU. https://www.sbu.se/en/about-sbu/. Accessed 1st June 2018 Swedish Research Council S (2017) Swedish Healthcare System. https://www.kliniskastudier.se/english/swedenresearchcountry/swedishhealthcaresystem.4.4b7fd4815f60023c4d83a.html. Accessed 21 March 2018 The Government Offices of Sweden (2014) How Sweden is governed. The Government of Sweden. http://www.government.se/how-sweden-is-governed/. Accessed 20-02-2016 2016 Wienke S, Brown K, Farmer M, Strange C (2014) Expanded carrier screening panels—does bigger mean better? Journal of community genetics 5:191–198 Wilfond BS, Kauffman TL, Jarvik GP, Reiss JA, Richards CS, McMullen C, Gilmore M, Himes P, Kraft SA, Porter KM, Schneider JL, Punj S, Leo MC, Dickerson JF, Lynch FL, Clarke E, Rope AF, Lutz K, Goddard KAB (2018) Lessons learned from a study of genomics-based carrier screening for reproductive decision making. Health Aff 37:809–816 World Health Organization (2018) What is a health technology. World Health Organization. http://www.who.int/health-technology-assessment/about/healthtechnology/en/ Accessed 1st June 2018 Zlotogora J (2009) Population programs for the detection of couples at risk for severe monogenic genetic diseases. Hum Genet 126:247–253. https://doi.org/10.1007/s00439-009-0669-y