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Swedish healthcare providers' perceptions of preconception expanded carrier screening (ECS)—a qualitative study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2016 (English)In: Journal of Community Genetics, ISSN 1868-6001, Vol. 7, no 3, p. 203-214Article in journal (Refereed) Published
Abstract [en]

Reproductive autonomy, medicalization, and discrimination against disabled and parental responsibility are the main ongoing ethical debates concerning reproductive genetic screening. To examine Swedish healthcare professionals’ views on preconception expanded carrier screening (ECS), a qualitative study involving academic and clinical institutions in Sweden was conducted in September 2014 to February 2015. Eleven healthcare professionals including clinicians, geneticists, a midwife, and a genetic counselor were interviewed in depth using a semi-structured interview guide. The questionnaire was constructed after reviewing the main literature and meetings with relevant healthcare providers. The interviews were recorded, transcribed verbatim, and content analyzed for categories and subcategories. Participants nurtured many ethical and non-ethical concerns regarding preconception ECS. Among the ethical concerns were the potential for discrimination, medicalization, concerns with prioritization of healthcare resources, and effects on reproductive freedom. The effects of implementation of preconception ECS, its stakeholders, regulations, and motivation are some of non-ethical concerns. These concerns, if not addressed, may affect the uptake and usage of carrier screening within Swedish healthcare system. As this is a qualitative study with a small non-random sample size, the findings cannot be generalized. The participants had little to no working experience with expanded screening panels. Moreover, the interviews were conducted in English, a second language for the participants, which might have limited the expression of their views. However, the authors claim that the findings may be pertinent to similar settings in other Scandinavian countries.

Place, publisher, year, edition, pages
Springer, 2016. Vol. 7, no 3, p. 203-214
Keywords [en]
reproductiion, autonomy, expanded carrier screening
National Category
Obstetrics, Gynecology and Reproductive Medicine Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:uu:diva-294966DOI: 10.1007/s12687-016-0268-2ISI: 000386778700004PubMedID: 27225888OAI: oai:DiVA.org:uu-294966DiVA, id: diva2:932129
Available from: 2016-05-31 Created: 2016-05-31 Last updated: 2019-01-11Bibliographically approved
In thesis
1. Couples Considering a Baby? Screen for the Future: Ethical and Implementation Aspects of Preconception Genetic Carrier Screening
Open this publication in new window or tab >>Couples Considering a Baby? Screen for the Future: Ethical and Implementation Aspects of Preconception Genetic Carrier Screening
2016 (English)Licentiate thesis, comprehensive summary (Other academic)
Place, publisher, year, edition, pages
Uppsala University, 2016. p. 31
National Category
Other Medical Sciences not elsewhere specified Other Medical Biotechnology
Identifiers
urn:nbn:se:uu:diva-366368 (URN)
Presentation
2018-03-14, 13:00
Opponent
Supervisors
Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2018-11-20Bibliographically approved
2. Considering a Baby? Responsible Screening for the Future: Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden
Open this publication in new window or tab >>Considering a Baby? Responsible Screening for the Future: Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Preconception expanded carrier screening is a novel technology that involves the offer of a screening test for many recessive diseases (via an expanded screening panel) to prospective parents, with no priori risk. Test positive couples have a number of reproductive choices; prenatal diagnosis and aborting affected fetus, IVF and preimplantation genetic diagnosis, sperm or ovum donation or simply accept the risk. The test had been piloted in studies and can potentially be implemented in Europe. Therefore, it seemed pertinent to evaluate stakeholders’ perspectives on ethical and social implications of implementing and using preconception ECS in Sweden.

Two main stakeholders were examined; healthcare professionals and health policymaking experts, via a mix of qualitative methods for data collection and data analysis. In Study I, we employed in-depth interviews to collect data and content analysis to analyze it. In Studies III and IV, expert interviews were used to gather data while thematic analysis was utilized to interpret it. Furthermore, in Study II, an ethical concept namely; reproductive autonomy, was critically discussed within a setting that expects a couple to make a conjoint reproductive decision about preconception ECS, while each partner still upholds his or her individual autonomy.

The main findings of the empirical studies (Studies I, III and IV) echo to a great extent the prevailing ethical and social debates associated with the novel technology. Respondents expressed concerns with reproductive autonomy, medicalization, prioritization of health resources, discrimination and long term societal changes. Furthermore, respondents emphasized the importance to observe Swedish values, such as human dignity, equality and solidarity, when assessing a preconception ECS program. In addition, they described practicalities of implementation and political considerations that are pertinent to the Swedish context. Finally, some respondents recognized the advantages of reduced suffering and decrease in fetal anomalies and abortion as a consequence of preconception ECS.

Study II, proposed a notion of couple autonomy, where certain demands if met, a couple’s reproductive decision can be accepted by healthcare staff as autonomous.

The findings, in this thesis, steer towards non implementation of preconception ECS in its current status within the publicly-funded healthcare system in Sweden. This is because healthcare providers and experts were of the opinion that it would not solve a medical need, threaten Swedish values and use up resources extensively.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2019. p. 53
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1531
Keywords
Preconception expanded carrier screening, reproductive autonomy, solidarity, popula-tion screening, genomics, ELSI
National Category
Other Medical Biotechnology Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:uu:diva-372736 (URN)978-91-513-0553-0 (ISBN)
Public defence
2019-02-28, Sal IV, Universtetshuset, Biskopsgatan 3, Uppsala, 13:00 (English)
Opponent
Supervisors
Available from: 2019-02-05 Created: 2019-01-10 Last updated: 2019-02-18

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Matar, AmalKihlbom, UlrikHöglund, Anna T.

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