Cargando…

Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects

Classic galactosemia is a rare inherited disorder of galactose metabolism. Primary ovarian insufficiency (POI) with subfertility affects > 80% of female patients and is an important concern for patients and their parents. Healthcare providers are often consulted for subfertility treatment possibi...

Descripción completa

Detalles Bibliográficos
Autores principales: Haskovic, M., Poot, W. J., van Golde, R. J. T., Benneheij, S. H., Oussoren, E., de Wert, G. M. W. R., Krumeich, A., Rubio-Gozalbo, M. Estela
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Netherlands 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6133175/
https://www.ncbi.nlm.nih.gov/pubmed/29671189
http://dx.doi.org/10.1007/s10545-018-0179-y
_version_ 1783354469669404672
author Haskovic, M.
Poot, W. J.
van Golde, R. J. T.
Benneheij, S. H.
Oussoren, E.
de Wert, G. M. W. R.
Krumeich, A.
Rubio-Gozalbo, M. Estela
author_facet Haskovic, M.
Poot, W. J.
van Golde, R. J. T.
Benneheij, S. H.
Oussoren, E.
de Wert, G. M. W. R.
Krumeich, A.
Rubio-Gozalbo, M. Estela
author_sort Haskovic, M.
collection PubMed
description Classic galactosemia is a rare inherited disorder of galactose metabolism. Primary ovarian insufficiency (POI) with subfertility affects > 80% of female patients and is an important concern for patients and their parents. Healthcare providers are often consulted for subfertility treatment possibilities. An option brought up by the families is intrafamilial oocyte donation (mother-to-daughter or sister-to-sister). In addition to POI, galactosemia patients can also present varying cognitive and neurological impairments, which may not be fully clear at the time when mother-to-daughter oocyte donation is considered. Ethical and societal aspects arise when exploring this option. This study aimed to provide guidance in aspects to consider based on the views of different groups involved in the oocyte donation process. A qualitative study using in-depth semi-structured interviews with > 50 participants (patients, family members, and healthcare providers) was conducted. From these interviews, themes of concern emerged, which are illustrated and reviewed: (1) family relations, (2) medical impact, (3) patients’ cognitive level, (4) agreements to be made in advance and organization of counseling, (5) disclosure to the child, and (6) need for follow-up. We conclude that discussing and carrying out intrafamilial oocyte donation in galactosemia patients requires carefully addressing these themes. This study adds value to the already existing recommendations on intrafamilial oocyte donation in general, since it highlights important additional aspects from the perspectives of patients and their families. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s10545-018-0179-y) contains supplementary material, which is available to authorized users.
format Online
Article
Text
id pubmed-6133175
institution National Center for Biotechnology Information
language English
publishDate 2018
publisher Springer Netherlands
record_format MEDLINE/PubMed
spelling pubmed-61331752018-09-14 Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects Haskovic, M. Poot, W. J. van Golde, R. J. T. Benneheij, S. H. Oussoren, E. de Wert, G. M. W. R. Krumeich, A. Rubio-Gozalbo, M. Estela J Inherit Metab Dis Original Article Classic galactosemia is a rare inherited disorder of galactose metabolism. Primary ovarian insufficiency (POI) with subfertility affects > 80% of female patients and is an important concern for patients and their parents. Healthcare providers are often consulted for subfertility treatment possibilities. An option brought up by the families is intrafamilial oocyte donation (mother-to-daughter or sister-to-sister). In addition to POI, galactosemia patients can also present varying cognitive and neurological impairments, which may not be fully clear at the time when mother-to-daughter oocyte donation is considered. Ethical and societal aspects arise when exploring this option. This study aimed to provide guidance in aspects to consider based on the views of different groups involved in the oocyte donation process. A qualitative study using in-depth semi-structured interviews with > 50 participants (patients, family members, and healthcare providers) was conducted. From these interviews, themes of concern emerged, which are illustrated and reviewed: (1) family relations, (2) medical impact, (3) patients’ cognitive level, (4) agreements to be made in advance and organization of counseling, (5) disclosure to the child, and (6) need for follow-up. We conclude that discussing and carrying out intrafamilial oocyte donation in galactosemia patients requires carefully addressing these themes. This study adds value to the already existing recommendations on intrafamilial oocyte donation in general, since it highlights important additional aspects from the perspectives of patients and their families. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s10545-018-0179-y) contains supplementary material, which is available to authorized users. Springer Netherlands 2018-04-18 2018 /pmc/articles/PMC6133175/ /pubmed/29671189 http://dx.doi.org/10.1007/s10545-018-0179-y Text en © The Author(s) 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Article
Haskovic, M.
Poot, W. J.
van Golde, R. J. T.
Benneheij, S. H.
Oussoren, E.
de Wert, G. M. W. R.
Krumeich, A.
Rubio-Gozalbo, M. Estela
Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
title Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
title_full Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
title_fullStr Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
title_full_unstemmed Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
title_short Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
title_sort intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6133175/
https://www.ncbi.nlm.nih.gov/pubmed/29671189
http://dx.doi.org/10.1007/s10545-018-0179-y
work_keys_str_mv AT haskovicm intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects
AT pootwj intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects
AT vangolderjt intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects
AT benneheijsh intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects
AT oussorene intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects
AT dewertgmwr intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects
AT krumeicha intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects
AT rubiogozalbomestela intrafamilialoocytedonationinclassicgalactosemiaethicalandsocietalaspects