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Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples
Couples who are at risk of transmitting a genetic disease to their offspring may face difficult challenges regarding reproductive decision-making. Deciding if, and how, to purse their child wish can be a demanding process. This study aims to describe the reproductive joint decision-making process of...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Berlin Heidelberg
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8241960/ https://www.ncbi.nlm.nih.gov/pubmed/33611773 http://dx.doi.org/10.1007/s12687-021-00510-x |
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author | Severijns, Y. de Die-Smulders, C. E. M. Gültzow, T. de Vries, H. van Osch, L. A. D. M. |
author_facet | Severijns, Y. de Die-Smulders, C. E. M. Gültzow, T. de Vries, H. van Osch, L. A. D. M. |
author_sort | Severijns, Y. |
collection | PubMed |
description | Couples who are at risk of transmitting a genetic disease to their offspring may face difficult challenges regarding reproductive decision-making. Deciding if, and how, to purse their child wish can be a demanding process. This study aims to describe the reproductive joint decision-making process of genetically at-risk couples. A qualitative study was conducted with 16 couples (N=31) at risk of transmitting a genetic disease to their offspring and who received genetic counseling. Most couples were not aware of all available reproductive options in the Netherlands. A variety of motives was reported with almost all couples expressing a preference towards a reproductive option in which the child is genetically related to both parents. Only a few couples considered other options such as the use of donor gametes, adoption, and foster parenting. All couples indicated that they had multiple conversations to reach a mutually supported reproductive decision. Several carriers reported feelings of guilt and in some couples, the woman appeared to have a greater impact in the decision-making process as she should carry a pregnancy and should undergo medical treatments. This study provides insight in the extensive decision-making process of genetically at-risk couples and the role of both partners in this process. These findings can guide the development of genetic counseling (e.g., increase awareness of available reproductive options) and decision support for these couples. |
format | Online Article Text |
id | pubmed-8241960 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Springer Berlin Heidelberg |
record_format | MEDLINE/PubMed |
spelling | pubmed-82419602021-07-13 Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples Severijns, Y. de Die-Smulders, C. E. M. Gültzow, T. de Vries, H. van Osch, L. A. D. M. J Community Genet Original Article Couples who are at risk of transmitting a genetic disease to their offspring may face difficult challenges regarding reproductive decision-making. Deciding if, and how, to purse their child wish can be a demanding process. This study aims to describe the reproductive joint decision-making process of genetically at-risk couples. A qualitative study was conducted with 16 couples (N=31) at risk of transmitting a genetic disease to their offspring and who received genetic counseling. Most couples were not aware of all available reproductive options in the Netherlands. A variety of motives was reported with almost all couples expressing a preference towards a reproductive option in which the child is genetically related to both parents. Only a few couples considered other options such as the use of donor gametes, adoption, and foster parenting. All couples indicated that they had multiple conversations to reach a mutually supported reproductive decision. Several carriers reported feelings of guilt and in some couples, the woman appeared to have a greater impact in the decision-making process as she should carry a pregnancy and should undergo medical treatments. This study provides insight in the extensive decision-making process of genetically at-risk couples and the role of both partners in this process. These findings can guide the development of genetic counseling (e.g., increase awareness of available reproductive options) and decision support for these couples. Springer Berlin Heidelberg 2021-02-20 2021-07 /pmc/articles/PMC8241960/ /pubmed/33611773 http://dx.doi.org/10.1007/s12687-021-00510-x Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Original Article Severijns, Y. de Die-Smulders, C. E. M. Gültzow, T. de Vries, H. van Osch, L. A. D. M. Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples |
title | Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples |
title_full | Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples |
title_fullStr | Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples |
title_full_unstemmed | Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples |
title_short | Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples |
title_sort | hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8241960/ https://www.ncbi.nlm.nih.gov/pubmed/33611773 http://dx.doi.org/10.1007/s12687-021-00510-x |
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