TY - JOUR
T1 - The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis
T2 - Initial findings from a grounded theory study
AU - Hershberger, Patricia E.
AU - Gallo, Agatha M.
AU - Kavanaugh, Karen
AU - Olshansky, Ellen
AU - Schwartz, Alan
AU - Tur-Kaspa, Ilan
N1 - Funding Information:
We gratefully acknowledge the couples who participated in the study and shared their decision-making experience with us. Katy Drazba, Sara Lake, and Ramya Padmanabhan provided valuable research assistance and Mark Mershon assisted with the Figures. Support for this research was from research grants awarded to Dr. Hershberger by the National Institutes of Health (NIH) , National Institute of Child Health and Human Development and the Office of Research on Women's Health ( K12 HD055892 ), National Institute of Nursing Research ( R03 NR010351 ), and the University of Illinois at Chicago College of Nursing Dean's Fund . The content of this article is the authors' responsibility and does not necessarily represent the official views of the NIH.
PY - 2012/5/1
Y1 - 2012/5/1
N2 - Exponential growth in genomics has led to public and private initiatives worldwide that have dramatically increased the number of procreative couples who are aware of their ability to transmit genetic disorders to their future children. Understanding how couples process the meaning of being genetically at-risk for their procreative life lags far behind the advances in genomic and reproductive sciences. Moreover, society, policy makers, and clinicians are not aware of the experiences and nuances involved when modern couples are faced with using Preimplantation Genetic Diagnosis (PGD). The purpose of this study was to discover the decision-making process of genetically at-risk couples as they decide whether to use PGD to prevent the transmission of known single-gene or sex-linked genetic disorders to their children. A qualitative, grounded theory design guided the study in which 22 couples (44 individual partners) from the USA, who were actively considering PGD, participated. Couples were recruited from June 2009 to May 2010 from the Internet and from a large PGD center and a patient newsletter. In-depth semi-structured interviews were completed with each individual partner within the couple dyad, separate from their respective partner. We discovered that couples move through four phases (Identify, Contemplate, Resolve, Engage) of a complex, dynamic, and iterative decision-making process where multiple, sequential decisions are made. In the Identify phase, couples acknowledge the meaning of their at-risk status. Parenthood and reproductive options are explored in the Contemplate phase, where 41% of couples remained for up to 36 months before moving into the Resolve phase. In Resolve, one of three decisions about PGD use is reached, including: Accepting, Declining, or Oscillating. Actualizing decisions occur in the Engage phase. Awareness of the decision-making process among genetically at-risk couples provides foundational work for understanding critical processes and aids in identifying important gaps for intervention and future research.
AB - Exponential growth in genomics has led to public and private initiatives worldwide that have dramatically increased the number of procreative couples who are aware of their ability to transmit genetic disorders to their future children. Understanding how couples process the meaning of being genetically at-risk for their procreative life lags far behind the advances in genomic and reproductive sciences. Moreover, society, policy makers, and clinicians are not aware of the experiences and nuances involved when modern couples are faced with using Preimplantation Genetic Diagnosis (PGD). The purpose of this study was to discover the decision-making process of genetically at-risk couples as they decide whether to use PGD to prevent the transmission of known single-gene or sex-linked genetic disorders to their children. A qualitative, grounded theory design guided the study in which 22 couples (44 individual partners) from the USA, who were actively considering PGD, participated. Couples were recruited from June 2009 to May 2010 from the Internet and from a large PGD center and a patient newsletter. In-depth semi-structured interviews were completed with each individual partner within the couple dyad, separate from their respective partner. We discovered that couples move through four phases (Identify, Contemplate, Resolve, Engage) of a complex, dynamic, and iterative decision-making process where multiple, sequential decisions are made. In the Identify phase, couples acknowledge the meaning of their at-risk status. Parenthood and reproductive options are explored in the Contemplate phase, where 41% of couples remained for up to 36 months before moving into the Resolve phase. In Resolve, one of three decisions about PGD use is reached, including: Accepting, Declining, or Oscillating. Actualizing decisions occur in the Engage phase. Awareness of the decision-making process among genetically at-risk couples provides foundational work for understanding critical processes and aids in identifying important gaps for intervention and future research.
KW - Assisted reproductive technology
KW - Decision theory
KW - Decision-making
KW - Family planning
KW - In vitro fertilization
KW - Prenatal diagnosis
KW - USA
UR - http://www.scopus.com/inward/record.url?scp=84859750418&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2012.02.003
DO - 10.1016/j.socscimed.2012.02.003
M3 - Article
C2 - 22445765
AN - SCOPUS:84859750418
SN - 0277-9536
VL - 74
SP - 1536
EP - 1543
JO - Social Science and Medicine
JF - Social Science and Medicine
IS - 10
ER -
