More than 10 years after the first 'savior siblings': Parental experiences surrounding preimplantation genetic diagnosis

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17 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)594-602
Number of pages9
JournalJournal of Genetic Counseling
Volume22
Issue number5
DOIs
StatePublished - Oct 2013

Bibliographical note

Funding Information:
Acknowledgments We thank the Brocher Foundation for supporting our research. Data analysis and a first draft of this manuscript were completed during resident fellowships in November, 2011 at the Brocher Foundation, Hermance, Switzerland. The work could not have been possible without the infrastructure and staff support from the Fanconi Anemia Research Fund, Fanconi Canada, and Fanconi Hope. With much gratitude, we thank the families for taking the time to complete the survey and open up their lives to the researchers.

Keywords

  • Bone marrow transplantation
  • Decision making
  • Fanconi anemia
  • Preimplantation genetic diagnosis
  • Savior siblings

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