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Couples Considering a Baby? Screen for the Future: Ethical and Implementation Aspects of Preconception Genetic 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.
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: urn:nbn:se:uu:diva-366368OAI: oai:DiVA.org:uu-366368DiVA, id: diva2:1264442
Presentation
2018-03-14, 13:00
Opponent
Supervisors
Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2018-11-20Bibliographically approved
List of papers
1. Swedish healthcare providers' perceptions of preconception expanded carrier screening (ECS)—a qualitative study
Open this publication in new window or tab >>Swedish healthcare providers' perceptions of preconception expanded carrier screening (ECS)—a qualitative study
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
Keywords
reproductiion, autonomy, expanded carrier screening
National Category
Obstetrics, Gynecology and Reproductive Medicine Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-294966 (URN)10.1007/s12687-016-0268-2 (DOI)000386778700004 ()27225888 (PubMedID)
Available from: 2016-05-31 Created: 2016-05-31 Last updated: 2019-01-11Bibliographically approved
2. Couple autonomy in preconception expanded carrier screening
Open this publication in new window or tab >>Couple autonomy in preconception expanded carrier screening
(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:nbn:se:uu:diva-366363 (URN)
Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2019-01-11Bibliographically approved

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