PMID- 23624741
OWN - NLM
STAT- MEDLINE
DCOM- 20140415
LR  - 20211021
IS  - 1573-3599 (Electronic)
IS  - 1059-7700 (Linking)
VI  - 22
IP  - 5
DP  - 2013 Oct
TI  - More than 10 years after the first 'savior siblings': parental experiences 
      surrounding preimplantation genetic diagnosis.
PG  - 594-602
LID - 10.1007/s10897-013-9591-5 [doi]
AB  - 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.
FAU - Zierhut, Heather
AU  - Zierhut H
AD  - Department of Genetic Counseling, University of Minnesota, 420 Delaware Street, 
      SE, MMC 484, Minneapolis, MN, 55455, USA, hzierhu1@fairview.org.
FAU - MacMillan, Margaret L
AU  - MacMillan ML
FAU - Wagner, John E
AU  - Wagner JE
FAU - Bartels, Dianne M
AU  - Bartels DM
LA  - eng
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
DEP - 20130428
PL  - United States
TA  - J Genet Couns
JT  - Journal of genetic counseling
JID - 9206865
SB  - IM
MH  - Child
MH  - Fanconi Anemia/genetics/surgery
MH  - Female
MH  - Hematopoietic Stem Cell Transplantation
MH  - Humans
MH  - Male
MH  - Parents/*psychology
MH  - *Preimplantation Diagnosis
MH  - *Siblings
MH  - Surveys and Questionnaires
EDAT- 2013/04/30 06:00
MHDA- 2014/04/16 06:00
CRDT- 2013/04/30 06:00
PHST- 2012/08/30 00:00 [received]
PHST- 2013/04/04 00:00 [accepted]
PHST- 2013/04/30 06:00 [entrez]
PHST- 2013/04/30 06:00 [pubmed]
PHST- 2014/04/16 06:00 [medline]
AID - 10.1007/s10897-013-9591-5 [doi]
PST - ppublish
SO  - J Genet Couns. 2013 Oct;22(5):594-602. doi: 10.1007/s10897-013-9591-5. Epub 2013 
      Apr 28.