{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,3,6]],"date-time":"2025-03-06T05:10:46Z","timestamp":1741237846885,"version":"3.38.0"},"reference-count":55,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2024,7,22]],"date-time":"2024-07-22T00:00:00Z","timestamp":1721606400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,7,22]],"date-time":"2024-07-22T00:00:00Z","timestamp":1721606400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100009736","name":"Freiwillige Akademische Gesellschaft","doi-asserted-by":"publisher","award":["no grant number assigned"],"award-info":[{"award-number":["no grant number assigned"]}],"id":[{"id":"10.13039\/100009736","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100008375","name":"University of Basel","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100008375","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Bioethical Inquiry"],"published-print":{"date-parts":[[2024,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n          <jats:p>The principle of non-directiveness remains an important tenet in genetics. However, the concept has encountered growing criticism over the last two decades. There is an ongoing discussion about its appropriateness for specific situations in genetics, especially in light of recent significant advancements in genetic medicine. Despite the debate surrounding non-directiveness, there is a notable lack of up-to-date international research empirically investigating the issue from the perspective of those who actually do genetic counselling. Addressing this gap, our article delves into the viewpoints and experiences of medical geneticists in Germany and Switzerland. Twenty qualitative interviews were analysed employing reflexive thematic analysis. Participants\u2019 responses revealed substantial uncertainties and divergences in their understanding and application of the concept. It seems to cause distress since many geneticists stated that the principle was difficult to put into clinical practice and was no longer ethically justified given the increasing likelihood of therapeutic implications resulting from genomic testing outcomes. The insights provided by our qualitative empirical study accord with the ongoing theoretical debate regarding the definition, legitimacy, and feasibility of the principle. An adequately nuanced understanding and application of non-directiveness seems crucial to circumvent the risks inherent in the principle, while promoting patient autonomy and beneficence.<\/jats:p>","DOI":"10.1007\/s11673-024-10355-x","type":"journal-article","created":{"date-parts":[[2024,7,22]],"date-time":"2024-07-22T09:02:44Z","timestamp":1721638964000},"page":"711-722","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland"],"prefix":"10.1007","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5301-3433","authenticated-orcid":false,"given":"J.","family":"Eichinger","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"B. S.","family":"Elger","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"McLennan","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"I.","family":"Filges","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"I.","family":"Kon\u00e9","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2024,7,22]]},"reference":[{"issue":"2","key":"10355_CR1","doi-asserted-by":"publisher","first-page":"172","DOI":"10.1002\/(SICI)1096-8628(19971017)72:2<172::AID-AJMG9>3.0.CO;2-X","volume":"72","author":"DM Bartels","year":"1997","unstructured":"Bartels D.M., B.S. LeRoy, P. McCarthy, A.L. Caplan. 1997. Nondirectiveness in genetic counseling: a survey of practitioners. American Journal of Medical Genetics 72(2): 172\u2013179.","journal-title":"American Journal of Medical Genetics"},{"key":"10355_CR2","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780190626426.001.0001","volume-title":"Advanced genetic counseling: Theory and practice","author":"BA Biesecker","year":"2019","unstructured":"Biesecker B.A., K.F. Peters, R. Resta. 2019. Advanced genetic counseling: Theory and practice. New York: Oxford University Press."},{"issue":"2","key":"10355_CR3","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1007\/s13347-019-00391-6","volume":"34","author":"JC Bjerring","year":"2021","unstructured":"Bjerring J.C., and J. Busch. 2021. Artificial intelligence and patient-centered decision-making. Philosophy & Technology 34(2): 349\u2013371.","journal-title":"Philosophy & Technology"},{"key":"10355_CR4","first-page":"25","volume-title":"Prescribing our future: Ethical challenges in genetic counseling","author":"C Bosk","year":"1993","unstructured":"Bosk, C. 1993. The workplace ideology of genetic counselors. In Prescribing our future: Ethical challenges in genetic counseling, edited by D.M. Bartels, B. LeRoy, A.L. Caplan, 25\u201338. New York: Aldine de Gruyter."},{"key":"10355_CR5","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","volume":"3","author":"V Braun","year":"2006","unstructured":"Braun V., and V. Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3: 77\u2013101.","journal-title":"Qualitative Research in Psychology"},{"issue":"4","key":"10355_CR6","doi-asserted-by":"publisher","first-page":"589","DOI":"10.1080\/2159676X.2019.1628806","volume":"11","author":"V Braun","year":"2019","unstructured":"Braun V. 2019. Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health 11(4): 589\u2013597.","journal-title":"Qualitative Research in Sport, Exercise and Health"},{"key":"10355_CR7","first-page":"149","volume-title":"Prescribing our future: Ethical challenges in genetic counseling","author":"AL Caplan","year":"1993","unstructured":"Caplan, A.L. 1993. Neutrality is not morality: The ethics of genetic counselling. In Prescribing our future: Ethical challenges in genetic counseling, edited by D.M. Bartels, B. LeRoy, and A.L. Caplan, 149\u2013165. New York: Aldine de Gruyter."},{"issue":"3","key":"10355_CR8","doi-asserted-by":"publisher","first-page":"383","DOI":"10.1007\/s11019-022-10085-0","volume":"25","author":"W Cha\u0144ska","year":"2022","unstructured":"Cha\u0144ska, W. 2022. The principle of nondirectiveness in genetic counseling. Different meanings and various postulates of normative nature. Medicine, Health Care, and Philosophy 25(3): 383\u2013393.","journal-title":"Medicine, Health Care, and Philosophy"},{"issue":"4","key":"10355_CR9","doi-asserted-by":"publisher","first-page":"557","DOI":"10.1007\/s11673-022-10202-x","volume":"19","author":"W Cha\u0144ska","year":"2022","unstructured":"Cha\u0144ska, W., and K. Grunt-Mejer. 2022. The directiveness that dare not speak its name. Views and attitudes of Polish clinical geneticists toward the nondirectiveness principle. Journal of Bioethical Inquiry 19(4): 557\u2013569.","journal-title":"Journal of Bioethical Inquiry"},{"key":"10355_CR10","doi-asserted-by":"publisher","first-page":"541","DOI":"10.1007\/978-3-319-51783-4_31","volume-title":"History of human genetics: Aspects of its development and global perspectives","author":"A Clarke","year":"2017","unstructured":"Clarke, A. 2017. The evolving concept of non-directiveness in genetic counselling. In History of human genetics: Aspects of its development and global perspectives, edited by H. Petermann, P.S. Harper, and S. Doetz, 541\u2013566. Cham: Springer International Publishing."},{"key":"10355_CR11","unstructured":"\u2014\u2014\u2014. 2019. Harper\u2019s practical genetic counselling, 8th ed. London: CRC Press."},{"issue":"12","key":"10355_CR12","doi-asserted-by":"publisher","first-page":"1348","DOI":"10.1038\/s41431-023-01490-x","volume":"31","author":"A Clarke","year":"2023","unstructured":"\u2014\u2014\u2014. 2023. Commentary on Eichinger J, Zimmermann B, Elger B, McLennan S, Filges I, Kon\u00e9 I. 2023. \u201cIt's a nightmare\u201d: Informed consent in paediatric genome-wide sequencing. A qualitative expert interview study from Germany and Switzerland. European Journal of Human Genetics 31(12): 1348\u20131349.","journal-title":"European Journal of Human Genetics"},{"issue":"11","key":"10355_CR13","doi-asserted-by":"publisher","first-page":"52","DOI":"10.1080\/15265161.2017.1382168","volume":"17","author":"JF Childress","year":"2017","unstructured":"Childress, J.F. 2017. Needed: A more rigorous analysis of models of decision making and a Richer account of respect for autonomy. American Journal of Bioethics 17(11): 52\u201354.","journal-title":"American Journal of Bioethics"},{"issue":"4","key":"10355_CR14","doi-asserted-by":"publisher","first-page":"629","DOI":"10.1007\/s11019-022-10108-w","volume":"25","author":"J Debrabander","year":"2022","unstructured":"Debrabander, J. 2022. On the relation between decision quality and autonomy in times of patient-centered care: A case study. Medicine, Health Care, and Philosophy 25(4): 629\u2013639.","journal-title":"Medicine, Health Care, and Philosophy"},{"issue":"12","key":"10355_CR15","doi-asserted-by":"publisher","first-page":"1398","DOI":"10.1038\/s41431-023-01468-9","volume":"31","author":"J Eichinger","year":"2023","unstructured":"Eichinger, J., B. Zimmerman, B. Elger, S. McLennan, I. Filges, and I. Kon\u00e9. 2023a. \u201cIt\u2019s a nightmare\u201d: Informed consent in paediatric genome-wide sequencing. A qualitative expert interview study from Germany and Switzerland. European Journal of Human Genetics 31(12): 1398\u20131406.","journal-title":"European Journal of Human Genetics"},{"key":"10355_CR16","doi-asserted-by":"publisher","unstructured":"Eichinger, J., A.S. Dupont, S. McLennan, I. Filges, I. Kon\u00e9, and B.S. Elger. 2023b. \u201cEvery diagnosis is actionable.\u201d\u2014Reimbursement of paediatric exome sequencing: A qualitative expert interview study from Germany and Switzerland. Jusletter https:\/\/doi.org\/10.38023\/0b3ef47c-978c-4321-a933-04dd49ef1080.","DOI":"10.38023\/0b3ef47c-978c-4321-a933-04dd49ef1080"},{"issue":"2","key":"10355_CR17","doi-asserted-by":"publisher","first-page":"135","DOI":"10.1136\/jmg.37.2.135","volume":"37","author":"G Elwyn","year":"2000","unstructured":"Elwyn, G., J. Gray, and A. Clarke. 2000. Shared decision making and non-directiveness in genetic counselling. Journal of Medical Genetics 37(2): 135\u2013138.","journal-title":"Journal of Medical Genetics"},{"issue":"7","key":"10355_CR18","doi-asserted-by":"publisher","first-page":"500","DOI":"10.1097\/GIM.0b013e31817f280a","volume":"10","author":"JP Evans","year":"2008","unstructured":"Evans, J.P., and W. Burke. 2008. Genetic exceptionalism. Too much of a good thing? Genetics in Medicine 10(7): 500\u2013501.","journal-title":"Genetics in Medicine"},{"issue":"4950","key":"10355_CR19","first-page":"34","volume":"103","author":"I Filges","year":"2022","unstructured":"Filges, I., S. Cichon, T. Nouspikel, N. Porret, A. Rauch, and S. Unger. 2022. Genetische beratung: Konzepte, missverst\u00e4ndnisse, perspektiven [Genetic counseling: concepts, misunderstanding, perspectives]. Schweizerische \u00c4rztezeitung 103(4950): 34\u201336.","journal-title":"Schweizerische \u00c4rztezeitung"},{"issue":"1","key":"10355_CR20","doi-asserted-by":"publisher","first-page":"51","DOI":"10.1080\/15265161.2018.1544304","volume":"19","author":"NA Garrison","year":"2019","unstructured":"Garrison N.A., K.B. Brothers, A.J. Goldenberg, and J.A. Lynch. 2019. Genomic Contextualism: Shifting the rhetoric of genetic exceptionalism. The American Journal of Bioethics 19(1): 51\u201363.","journal-title":"The American Journal of Bioethics"},{"key":"10355_CR21","unstructured":"GUMG: Bundesgesetz \u00fcber genetische Untersuchungen beim Menschen [Federal Act on Human Genetic Testing]. Inkraft getreten am 1. Dezember 2022. https:\/\/www.bag.admin.ch\/bag\/de\/home\/gesetze-und-bewilligungen\/gesetzgebung\/gesetzgebung-mensch-gesundheit\/gesetzgebung-genetische-untersuchungen.html. Accessed July 15, 2023."},{"issue":"S1","key":"10355_CR22","doi-asserted-by":"publisher","first-page":"S14","DOI":"10.1542\/peds.2018-1099D","volume":"143","author":"C Gyngell","year":"2019","unstructured":"Gyngell, C., A.J. Newson, D. Wilkinson, Z. Stark, and J. Savulescu. 2019. Rapid challenges: Ethics and genomic neonatal intensive care. Pediatrics 143(S1): S14\u2013s21.","journal-title":"Pediatrics"},{"key":"10355_CR23","unstructured":"Institute of Medicine. 2001. Envisioning the national health care quality report. Washington."},{"issue":"5","key":"10355_CR24","doi-asserted-by":"publisher","first-page":"718","DOI":"10.1002\/jgc4.1207","volume":"29","author":"L Jamal","year":"2020","unstructured":"Jamal L., W. Schupmann, and B.E. Berkman. 2020. An ethical framework for genetic counseling in the genomic era. Journal of Genetic Counseling 29(5): 718\u2013727.","journal-title":"Journal of Genetic Counseling"},{"issue":"2","key":"10355_CR25","doi-asserted-by":"publisher","first-page":"82","DOI":"10.1080\/23294515.2017.1287786","volume":"8","author":"L Jamal","year":"2017","unstructured":"Jamal L., J.O. Robinson, K.D. Christensen, et al. 2017. When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing. AJOB Empirical Bioethics 8(2): 82\u201388.","journal-title":"AJOB Empirical Bioethics"},{"issue":"1","key":"10355_CR26","doi-asserted-by":"publisher","first-page":"9","DOI":"10.1007\/BF00960080","volume":"1","author":"S Kessler","year":"1992","unstructured":"Kessler S. 1992. Psychological aspects of genetic counseling: VII. Thoughts on directiveness. Journal of Genetic Counseling 1(1): 9\u201317.","journal-title":"Journal of Genetic Counseling"},{"issue":"10","key":"10355_CR27","doi-asserted-by":"publisher","first-page":"e390","DOI":"10.3928\/19382359-20220803-05","volume":"51","author":"S Kikano","year":"2022","unstructured":"Kikano S., and P.J. Kannankeril. 2022. Precision medicine in pediatric cardiology. Pediatric Annals 51(10): e390\u2013e395.","journal-title":"Pediatric Annals"},{"issue":"1","key":"10355_CR28","doi-asserted-by":"publisher","first-page":"4","DOI":"10.1111\/j.1365-2648.2012.06064.x","volume":"69","author":"A Kitson","year":"2013","unstructured":"Kitson A., A. Marshall, K. Bassett, and K. Zeitz. 2013. What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced Nursing 69(1): 4\u201315.","journal-title":"Journal of Advanced Nursing"},{"key":"10355_CR29","doi-asserted-by":"crossref","unstructured":"Koplin, J.J., C. Gyngell, J. Savulescu, and D.F. Vears. 2022. Moving from \u201cfully\u201d to \u201cappropriately\u201d informed consent\u00a0in genomics: The PROMICE framework. Bioethics 36(6): 655\u2013665.","DOI":"10.1111\/bioe.13027"},{"issue":"4","key":"10355_CR30","first-page":"665","volume":"35","author":"BL Leech","year":"2002","unstructured":"Leech, B.L. 2002. Asking questions: Techniques for semistructured interviews. PS: Political Science and Politics 35(4): 665\u2013668.","journal-title":"PS: Political Science and Politics"},{"key":"10355_CR31","volume-title":"Prescribing our future: Ethical challenges in genetic counseling","author":"BS LeRoy","year":"1993","unstructured":"LeRoy, B.S. 1993. When theory meets practice: Challenges to the field of genetic counseling. In Prescribing our future: Ethical challenges in genetic counseling, edited by D.M. Bartels, B. LeRoy, and A.L. Caplan. New York: Aldine de Gruyter."},{"key":"10355_CR32","volume-title":"Value Practices in the Life Sciences and Medicine","author":"I L\u00f6wy","year":"2015","unstructured":"L\u00f6wy, I. 2015. Norms, values, and constraints: The case of prenatal diagnosis. In Value Practices in the Life Sciences and Medicine edited by I. Dussauge, C. Helgesson, and F. Lee. Oxford University Press."},{"issue":"2","key":"10355_CR33","doi-asserted-by":"publisher","first-page":"131","DOI":"10.1080\/00380237.2018.1544514","volume":"52","author":"J Low","year":"2019","unstructured":"Low, J. 2019. A pragmatic definition of the concept of theoretical saturation. Sociological Focus 52(2): 131\u2013139.","journal-title":"Sociological Focus"},{"issue":"11","key":"10355_CR34","doi-asserted-by":"publisher","first-page":"2029","DOI":"10.1038\/s41436-021-01242-6","volume":"23","author":"K Manickam","year":"2021","unstructured":"Manickam, K., M.R. McClain, L.A. Demmer, et al. 2021. Exome and genome sequencing for pediatric patients with congenital anomalies or intellectual disability: An evidence-based clinical guideline of the American College of Medical Genetics and Genomics (ACMG). Genetics in medicine: official journal of the American College of Medical Genetics 23(11): 2029\u20132037.","journal-title":"Genetics in medicine: official journal of the American College of Medical Genetics"},{"issue":"4","key":"10355_CR35","doi-asserted-by":"publisher","first-page":"658","DOI":"10.1038\/s41591-022-01717-2","volume":"28","author":"J Mateo","year":"2022","unstructured":"Mateo J., L. Steuten, P. Aftimos, et al. 2022. Delivering precision oncology to patients with cancer. Nature medicine: 28(4): 658\u2013665.","journal-title":"Nature medicine"},{"issue":"6","key":"10355_CR36","doi-asserted-by":"publisher","first-page":"522","DOI":"10.1093\/fampra\/13.6.522","volume":"13","author":"MN Marshall","year":"1996","unstructured":"Marshall, M.N. 1996. Sampling for qualitative research. Family Practice 13(6): 522\u2013526.","journal-title":"Family Practice"},{"key":"10355_CR37","doi-asserted-by":"crossref","unstructured":"Nieuwenhuijze, M.J., I. Korstjens, A. de Jonge, et al. 2014. On speaking terms: A Delphi study on shared decision-making in maternity care. BMC Pregnancy Childbirth 14.","DOI":"10.1186\/1471-2393-14-223"},{"issue":"5","key":"10355_CR38","doi-asserted-by":"publisher","first-page":"533","DOI":"10.1007\/s10488-013-0528-y","volume":"42","author":"LA Palinkas","year":"2015","unstructured":"Palinkas, L.A., S.M. Horwitz, C.A. Green, J.P. Wisdom, N. Duan, and K. Hoagwood. 2015. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration and Policy in Mental Health and Mental Health Services Research 42(5): 533\u2013544.","journal-title":"Administration and Policy in Mental Health and Mental Health Services Research"},{"issue":"6","key":"10355_CR39","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","volume":"19","author":"A Tong","year":"2007","unstructured":"Tong, A., P. Sainsbury, and J. Craig. 2007. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19(6): 349\u2013357.","journal-title":"International Journal for Quality in Health Care"},{"issue":"1","key":"10355_CR40","doi-asserted-by":"publisher","first-page":"47","DOI":"10.1023\/A:1009972728031","volume":"4","author":"CA Rentmeester","year":"2001","unstructured":"Rentmeester, C.A. 2001. Value neutrality in genetic counseling: An unattained ideal. Medicine, Health Care and Philosophy 4(1): 47\u201351.","journal-title":"Medicine, Health Care and Philosophy"},{"issue":"4","key":"10355_CR41","doi-asserted-by":"publisher","first-page":"269","DOI":"10.1002\/ajmg.c.30093","volume":"142C","author":"RG Resta","year":"2006","unstructured":"Resta, R.G. 2006. Defining and redefining the scope and goals of genetic counseling. American Journal of Medical Genetics Part C: Seminars in Medical Genetics 142C(4): 269\u2013275.","journal-title":"American Journal of Medical Genetics Part C: Seminars in Medical Genetics"},{"key":"10355_CR42","doi-asserted-by":"publisher","first-page":"100077","DOI":"10.1016\/j.ssmqr.2022.100077","volume":"2","author":"M Rost","year":"2022","unstructured":"Rost, M., Z. Stuerner, P. Niles, L. Arnold. 2022. \u201cReal decision-making is hard to find\u201d\u2014Swiss perinatal care providers\u2019 perceptions of and attitudes towards decision-making in birth: A qualitative study. SSM\u2014 Qualitative Research in Health 2: 100077.","journal-title":"SSM\u2014 Qualitative Research in Health"},{"issue":"3","key":"10355_CR43","doi-asserted-by":"publisher","first-page":"325","DOI":"10.1007\/s11673-020-09983-w","volume":"17","author":"W Schupmann","year":"2020","unstructured":"Schupmann, W., L. Jamal, and B.E. Berkman. 2020. Re-examining the ethics of genetic counselling in the genomic e ra. Journal of Bioethical Inquiry 17(3): 325\u2013335.","journal-title":"Journal of Bioethical Inquiry"},{"issue":"1","key":"10355_CR44","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1515\/medgen-2021-2055","volume":"33","author":"G Schwaninger","year":"2021","unstructured":"Schwaninger, G., S. Heidemann, W. Hofmann, et al. 2021. Prospects and challenges for the genetic counsellor profession in the German-speaking countries: Report of a workshop. Medizinische Genetik 33(1): 35\u201344.","journal-title":"Medizinische Genetik"},{"issue":"10","key":"10355_CR45","first-page":"797","volume":"9","author":"JL Scully","year":"2008","unstructured":"Scully, J.L. 2008. Disability and genetics in the era of genomic medicine. Nature reviews Genetics 9(10): 797\u2013802.","journal-title":"Genetics"},{"key":"10355_CR46","doi-asserted-by":"crossref","unstructured":"Sepucha, K.R., F.J. Fowler, and A.G. Mulley. 2004. Policy support for patient-centered care: The need for measurable improvements in decision quality. Health Affairs Suppl Variation: VAR54\u201362.","DOI":"10.1377\/hlthaff.var.54"},{"issue":"8","key":"10355_CR47","doi-asserted-by":"publisher","first-page":"1542","DOI":"10.1111\/1467-9566.12614","volume":"39","author":"T Stivers","year":"2017","unstructured":"Stivers, T., and S. Timmermans. 2017. The Actionability of Exome sequencing testing results. Sociology of Health & Illness 39(8): 1542\u20131556.","journal-title":"Sociology of Health & Illness"},{"key":"10355_CR48","doi-asserted-by":"crossref","unstructured":"S2k-Leitlinie Humangenetische Diagnostik und Genetische Beratung. 2019. Medizinische Genetik 30(4): 469\u2013522.","DOI":"10.1007\/s11825-018-0223-1"},{"issue":"1","key":"10355_CR49","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1080\/23294515.2020.1823906","volume":"12","author":"DF Vears","year":"2021","unstructured":"Vears, D.F., P. Borry, J. Savulescu, and J.J. Koplin. 2021. Old challenges or new issues? Genetic health professionals\u2019 experiences obtaining informed consent in diagnostic genomic sequencing. AJOB Empirical Bioethics 12(1): 12\u201323.","journal-title":"AJOB Empirical Bioethics"},{"issue":"3","key":"10355_CR50","doi-asserted-by":"publisher","first-page":"586","DOI":"10.1016\/j.pec.2018.10.023","volume":"102","author":"S Vedam","year":"2019","unstructured":"Vedam, S., K. Stoll, D.N. McRae, et al. 2019. Patient-led decision making: Measuring autonomy and respect in Canadian maternity care. Patient Education and Counseling 102(3): 586\u2013594.","journal-title":"Patient Education and Counseling"},{"key":"10355_CR51","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1007\/s10897-005-9008-1","volume":"2","author":"J Weil","year":"2006","unstructured":"Weil, J., K. Ormond, J. Peters, K. Peters, B.B. Biesecker, and B. LeRoy. 2006. The relationship of nondirectiveness to genetic counseling: Report of a workshop at the 2003 NSGC Annual Education Conference. Journal of Genetic Counseling (2): 85\u201393.","journal-title":"Journal of Genetic Counseling"},{"issue":"3","key":"10355_CR52","doi-asserted-by":"publisher","first-page":"281","DOI":"10.1111\/j.1525-1497.2004.30261.x","volume":"19","author":"SJ Weiner","year":"2004","unstructured":"Weiner, S.J. 2004. Contextualizing medical decisions to individualize care. Journal of General Internal Medicine 19(3): 281\u2013285.","journal-title":"Journal of General Internal Medicine"},{"key":"10355_CR53","volume-title":"Learning from strangers: The art and method of qualitative interview studies","author":"R Weiss","year":"1995","unstructured":"Weiss, R. 1995. Learning from strangers: The art and method of qualitative interview studies. New York: Simon and Schuster."},{"issue":"1\u20132","key":"10355_CR54","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1016\/S0738-3991(97)00051-7","volume":"32","author":"FJ van Zuuren","year":"1997","unstructured":"van Zuuren, F.J. 1997. The standard of neutrality during genetic counselling: An empirical investigation. Patient Education and Counselling 32(1\u20132): 69\u201379.","journal-title":"Patient Education and Counseling"},{"issue":"2728","key":"10355_CR55","doi-asserted-by":"publisher","first-page":"w20274","DOI":"10.4414\/smw.2020.20274","volume":"150","author":"B Zimmermann","year":"2020","unstructured":"Zimmermann, B., G. Starke, D. Shaw, B. Elger, and I. Kon\u00e9. 2020. Actionability and scope should determine the extent of counselling for presymptomatic genetic testing. Swiss Medical Weekly 150(2728): w20274.","journal-title":"Swiss Medical Weekly"}],"container-title":["Journal of Bioethical Inquiry"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11673-024-10355-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11673-024-10355-x\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11673-024-10355-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,3,5]],"date-time":"2025-03-05T08:46:43Z","timestamp":1741164403000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11673-024-10355-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,7,22]]},"references-count":55,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,12]]}},"alternative-id":["10355"],"URL":"https:\/\/doi.org\/10.1007\/s11673-024-10355-x","relation":{},"ISSN":["1176-7529","1872-4353"],"issn-type":[{"type":"print","value":"1176-7529"},{"type":"electronic","value":"1872-4353"}],"subject":[],"published":{"date-parts":[[2024,7,22]]},"assertion":[{"value":"27 September 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"3 March 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 July 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"We thank Natascha Stoffel for the transcription of most of the interviews.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"<!--Emphasis Type='Bold' removed-->Acknowledgements:"}},{"value":"The authors declare no conflicts of interest.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of Interest"}},{"value":"Since participants have not provided consent to share their data, study materials cannot be made openly available. However, we will share portions of the study material relevant to the manuscript upon reasonable request. Please contact the corresponding author.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"<!--Emphasis Type='Bold' removed-->Data Availability"}},{"value":"Open access funding provided by University of Basel. The study was financed by research support provided by the University of Basel and the Freie Akademische Gesellschaft Basel (personal career grant for completion of PhD Thesis). The funding body did not influence the design of the study and collection, analysis, and interpretation of data or in writing the manuscript.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"<!--Emphasis Type='Bold' removed-->Funding"}},{"value":"Study documents were reviewed by the responsible ethics committee (Ethikkommission Nordwest- und Zentralschweiz; EKNZ). The EKNZ declared that the study does not fall under the Swiss Human Research Act (Art. 2) because no health-related data were collected and data were coded and pseudonymized. Also, interviewing health professionals does not require ethical approval in Switzerland. Hence, ethical approval was not needed. Nevertheless, the EKNZ issued a declaration of no objection (Req-2019-00467) confirming that the project fulfills the scientific and ethical standards for research with humans (Art. 51, Swiss Human Research Act).","order":6,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics Approval"}},{"value":"Written informed consent was obtained prior to data collection and was considered subject to renegotiating over time. An information sheet was provided explaining the nature of the project, including the right to withdraw or stop the interview at any moment.","order":7,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent"}},{"value":"Johanna Eichinger, Bernice Elger, Stuart McLennan, Isabel Filges and Insa Kon\u00e9 conceptualized the study. Johanna Eichinger developed the idea for this paper. Johanna Eichinger carried out data collection. Johanna Eichinger and Insa Kon\u00e9 carried out qualitative data analysis and interpreted the results. Johanna Eichinger provided the theoretical background and drafted the manuscript. Stuart McLennan, Bernice Elger, and Isabel Filges provided contributions to the analysis, interpretation of results, and application of the normative background. All authors critically revised the manuscript for content and interpretation of the data and approved the final version of the manuscript for submission.","order":8,"name":"Ethics","group":{"name":"EthicsHeading","label":"Authors\u2019 Contributions"}}]}}