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Couple autonomy in preconception expanded carrier screening
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.ORCID iD: 0000-0001-5208-999X
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: Preconception Expanded Carrier Screening (ECS) is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they would enhance reproductive autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. A further aim was to shed light on what occurs in reproductive clinics and to suggest concrete implications for the approach of healthcare professionals in those clinics. Discussion: Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions: A notion of couple autonomy can be fruitful for healthcare professionals by facilitating the ways in which close ones are vital for the decision-making concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship.

National Category
Other Medical Biotechnology
Identifiers
URN: urn:nbn:se:uu:diva-366363OAI: oai:DiVA.org:uu-366363DiVA, id: diva2:1264431
Available from: 2018-11-20 Created: 2018-11-20 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, AmalHöglund, Anna TSegerdahl, PärKihlbom, Ulrik

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