Evidence map›Paper›PMID 29671189›Full record

ArticleJournal of inherited metabolic disease2018

Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects.

M Haskovic, W J Poot, R J T van Golde, S H Benneheij, E Oussoren, G M W R de Wert, A Krumeich, M Estela Rubio-Gozalbo

Open access · hybridAbstract read
In one paragraph

Article in Journal of inherited metabolic disease, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
0.4field-weighted citation impact, top 32% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. Review
  4. Article
  5. Current and Future Treatments for Classic Galactosemia.Journal of personalized medicine · 2021
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 5 institutions in 2 countries.

M HaskovicDepartment of Pediatrics and Department of Clinical Genetics, Maastricht University Medical Center+, P. Debeylaan 25, P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands.
W J PootDepartment of Pediatrics and Department of Clinical Genetics, Maastricht University Medical Center+, P. Debeylaan 25, P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands.
R J T van GoldeDepartment of Obstetrics & Gynecology, Maastricht University Medical Center+, Maastricht, The Netherlands.
S H BenneheijDepartment of Obstetrics & Gynecology, Division of Reproductive Medicine, Erasmus Medical Center, Rotterdam, The Netherlands.
E OussorenDepartment of Pediatrics, Erasmus Medical Center, Sophia Children's Hospital, Rotterdam, The Netherlands.
G M W R de WertGROW-School for Oncology and Developmental Biology, Maastricht University, Maastricht, The Netherlands.
A KrumeichDepartment of Health, Ethics & Society, Maastricht University, Maastricht, The Netherlands.
M Estela Rubio-GozalboDepartment of Pediatrics and Department of Clinical Genetics, Maastricht University Medical Center+, P. Debeylaan 25, P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands. estela.rubio@mumc.nl.
Maastricht University · NLUniversity Medical Center · USErasmus MC · NLErasmus MC - Sophia Children’s Hospital · NLMaastricht University Medical Centre · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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.

Indexed as

FemaleFertility PreservationGalactosemiasHumansInfertilityInterviews as TopicMothersNetherlandsNuclear FamilyOocyte DonationPrimary Ovarian InsufficiencyQualitative Research

Identifiers

PMID29671189
PMCPMC6133175
OpenAlexW2800334849

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.