ArticleJournal of genetic counseling2013
More than 10 years after the first 'savior siblings': parental experiences surrounding preimplantation genetic diagnosis.
Article in Journal of genetic counseling, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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.
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.
- Extent and Predictors of Decision Regret among Informal Caregivers Making Decisions for a Loved One: A Systematic Review.Medical decision making : an international journal of the Society for Medical Decision Making · 2020Pooled it
- Comparable Outcomes after HLA-Matched Sibling and Alternative Donor Hematopoietic Cell Transplantation for Children with Fanconi Anemia and Severe Aplastic Anemia.Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation · 2018Trial
- Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey.Journal of participatory medicine · 2026Article
- Family planning and preimplantation testing: family experiences in congenital adrenal hyperplasia.Frontiers in endocrinology · 2024Article
- Specialist physicians' referral behavior regarding preimplantation genetic testing for single-gene disorders: Is there room to grow?F&S reports · 2021Article
- Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing.Prenatal diagnosis · 2020Article
- The decision-making process, experience, and perceptions of preimplantation genetic testing (PGT) users.Journal of assisted reproduction and genetics · 2020Article
- Factors Influencing the Decision-Making Process and Long-Term Interpersonal Outcomes for Parents Who Undergo Preimplantation Genetic Diagnosis for Fanconi Anemia: a Qualitative Investigation.Journal of genetic counseling · 2017Article
- Hematopoietic cell transplantation in Fanconi anemia: current evidence, challenges and recommendations.Expert review of hematology · 2017Review
- Healthy Baby Born to a Robertsonian Translocation Carrier following Next-Generation Sequencing-Based Preimplantation Genetic Diagnosis: A Case Report.AJP reports · 2015Article
- Genetic counseling for Fanconi anemia: crosslinking disciplines.Journal of genetic counseling · 2014Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Preimplantation genetic diagnosis (PGD) to create a healthy donor for a sibling's hematopoetic stem cell transplantation for a child with Fanconi Anemia (FA) was first reported in 2001. Yet we know little about the experiences of parents who have encountered decision making surrounding PGD and human leukocyte antigen (HLA)-typing. The first aim of this study was to understand parents' awareness, perceptions and beliefs about reproductive decision-making including emotional, cognitive, moral dimensions as well as regret surrounding the use of this technology. The second aim was to describe the experiences and rationale of parents of children with a single gene disorder regarding the factors that influenced their decision making surrounding the use of natural pregnancy and/or PGD and HLA-typing. Parents from two national FA support networks in the US and Canada responded to an emailed survey about reproductive decision making and outcomes surrounding natural pregnancy and PGD and HLA-typing. Descriptive statistics and Pearson's Chi-Square tests were used to describe and compare data. Our results indicate that the most important factors in the PGD decision making process were the health of the child and cognitive appraisals followed by emotional responses and then moral judgments. A significant difference was noted in parents considering natural pregnancy before and after 2001 (p = 0.01). Unexpected findings were that less than 35 % of parents were offered PGD by any health care professional and only 70 % were aware PGD with HLA-typing was a reproductive option. Our research suggests that the option of PGD and HLA-typing may influence parents' reproductive decision making choices.
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Registered trials
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.