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Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS)—a qualitative study

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Abstract

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.

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Study funding and acknowledgments

This research was supported by Uppsala University, Sweden. The authors would like to extend their thanks to respondents who took time of their busy schedules to participate in the study.

Author’s roles

A. M.: main contributions to conception, design, acquisition of data, analysis, and interpretation of data; drafting the manuscript and revising it, and final approval of the version to be published.

U. K.: assist with the conception and design. Revising it critically for important intellectual content, and final approval of the version to be published.

A. T. H.: contributions to the design, assist with analysis and interpretation of data; revising it critically for important intellectual content, and final approval of the version to be published.

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Authors and Affiliations

  1. Center for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Box 564, 751 22, Uppsala, Sweden

    A. Matar, U. Kihlbom & A. T. Höglund

Authors
  1. A. Matar
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  2. U. Kihlbom
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  3. A. T. Höglund
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Corresponding author

Correspondence to A. Matar.

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Funding

This research was funded by Uppsala University, Sweden.

Conflicts of interest

Author AM declares no conflict of interest. Author UK declares no conflict of interest. Author ATH declares no conflict of interest.

Ethical approval

This study involved human participants. All procedures were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Verbal informed consent was obtained from all individual participants included in the study.

This article does not contain any studies with animals performed by any of the authors.

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Matar, A., Kihlbom, U. & Höglund, A.T. Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS)—a qualitative study. J Community Genet 7, 203–214 (2016). https://doi.org/10.1007/s12687-016-0268-2

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  • DOI: https://doi.org/10.1007/s12687-016-0268-2

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