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Values and value conflicts in implementation and use of preconception expanded carrier screening - an expert
Amal Matar1, Mats G Hansson2, Anna T Höglund2
1Centre for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Box 564, SE-751 22, Uppsala, Sweden. amal.matar@crb.uu.se.
BMC Medical Ethics
|April 25, 2019
Summary
Swedish healthcare experts identified key values, including respect for persons and solidarity, that may conflict with the implementation of preconception expanded carrier screening (ECS). The study highlights potential challenges to societal norms and welfare state principles.
Area of Science:
- Medical Ethics
- Health Technology Assessment
- Genetic Screening
Background:
- Preconception expanded carrier screening (ECS) is a novel health technology requiring ethical and societal assessment.
- ECS involves genetic testing for couples without known risks of recessive diseases, screening for multiple conditions simultaneously.
- The technology has been piloted and is under discussion internationally, necessitating examination within specific healthcare contexts.
Purpose of the Study:
- To investigate the values and value conflicts identified by Swedish healthcare experts regarding preconception ECS.
- To understand expert perspectives on the implementation and use of preconception ECS within the Swedish healthcare system.
Main Methods:
- Conducted semi-structured interviews with ten experts influencing health policymaking in Sweden.
- Participants included physicians, bioethicists, legal experts, theologians, and political representatives from governmental and non-governmental bodies.
- Employed thematic analysis to identify key themes, categories, and subcategories within the expert interviews.
Main Results:
- Two primary themes emerged: 'values' and 'value conflicts'.
- Core values identified included respect for persons, solidarity, human dignity, do no harm, health, and love, with respect for persons and solidarity being most prominent.
- Experts discussed conflicts between preconception ECS and existing Swedish healthcare values such as equality and solidarity, as well as challenges to autonomy and integrity.
Conclusions:
- Healthcare experts highlighted values distinctive to welfare states like Sweden, noting how preconception ECS could potentially challenge these principles.
- The analysis indicated that certain values, particularly respect for persons and solidarity, were considered more substantive in the discussion.
- Preconception ECS implementation may necessitate careful consideration of its impact on established societal norms and ethical frameworks in Sweden.
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