PGD: Couples Decision Making at the Genetic and Reproductive Interface

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DESCRIPTION (provided by applicant): Advances in human genetics and assisted reproduction have expanded dramatically and most recently includes the innovative option of Preimplantation Genetic Diagnosis (PGD). This relatively new form of genetic screening circumvents conventional forms of prenatal diagnosis by identifying genetic disorders or chromosomal rearrangements prior to establishing uterine implantation and establishment of pregnancy. Couples where one or both partners are carriers of genetic disorders may benefit from using PGD because they avoid the difficult decision of whether or not to terminate a pregnancy after receiving an unfavorable prenatal diagnosis. Despite this benefit, there are multiple disadvantages of using PGD including the need for in vitro fertilization, potential misdiagnosis, financial expense, potential for supernumerary embryos and confronting fundamental values of disability prevention. Despite these far reaching considerations, little is known about the decision making processes of couples surrounding PGD use. The purpose of this study is to develop an initial theoretical understanding of the decision making process of couples who have recently accepted or declined the use of PGD for childhood genetic disorders and to evaluate and refine recruitment and methodological procedures to prepare for a larger study. Grounded theory design will guide this exploratory study. Recruitment of 20 couples will proceed through three approaches: a large urban infertility center, Internet web sites, and regional newsletters distributed by a nationally recognized support group. Couples, consisting of a male and female dyad, will be interviewed independently from their partner. In-depth, open-ended interviews will be completed with each participant via telephone or e-mail within three months from the time of physician consultation about PGD. Concepts derived from the interviews will be grouped into categories that reflect the meaning in the data that will eventually be integrated to develop the initial theoretical description of this dynamic decision process surrounding PGD use. The findings will also serve to guide the development of a planned larger study that will examine the decision making processes of couples surrounding PGD in more depth and will assist with the formulation of professional guidelines, inform public health policies, and promote understanding in other emerging areas of genetic testing and treatment. PUBLIC HEALTH RELEVANCE: Preimplantation Genetic Diagnosis (PGD) is a critical social and public health issue where our existing views and expectations are challenged regarding the way we think about genetic technology and reproduction. This study will examine the decision making process of couples who have accepted or declined the use of PGD for identifying childhood genetic disorders. The findings will help us understand dyadic decision making when genetic testing and reproductive technology are involved and will guide future research and begin to shape clinical practice, professional guidelines and public health policies.