ABSTRACTEXPERIENCING A PGD CYCLE: PREIMPLANTATION GENETIC DIAGNOSIS FROM THE PATIENT'S PERSPECTIVEByClaudia Cassidy Bennett The application of Preimplantation Genetic Diagnosis (PGD) has seen a rapid expansion since its inception. Initially created to allow known carriers of genetic disorders to have children free of the known genetic diseases, PGD is now used to improve in vitro fertilization (IVF) outcomes for infertile couples. Also, PGD is used by fertile couples for the purposes of sex selection and family balancing. PGD is the procedure that determines the genetic makeup of embryos created through IVF. The information gleaned from PGD assists couples in determining which embryo/s to use as part of their IVF cycle. This dissertation explores the experience of using PGD from the perspective of women/couples that used PGD to either combat infertility or have a child of a preferred gender. The women told their stories in their own words. In some cases, the woman's husband joined the conversation and talked about using PGD from his perspective. The reasons these two groups of women used PGD are very different, however their experiences are very similar. The treatment regimen for using PGD is the same for infertile and fertile women. Drawing from the stories told by PGD users, I present a picture of what the participants consider to be most salient about their experience as well as the decisions they needed to make throughout their PGD cycle. PGD is considered a cycle because it is a process of treatments. Each stage of treatment cycle brings with it different trials and concerns. Decisions made in later stages of the treatment process are informed by the knowledge gained from and the experience of former stages. The users of PGD do not always feel convinced about their decisions. They are often ambivalent and sometimes remorseful afterwards. Their stories demonstrate their strong commitment to having their biological child. These women were willing to endure the physical and emotional pain associated with the treatment regimen of PGD because it is the only treatment that can give them the best chance of having a biological child. PGD is the latest, most advanced treatment in the hierarchal arsenal of medical treatment for infertility. Even the most advanced treatment does not come with a 100% guarantee. I chose to use an ethnographic research method so I could get as close as possible to PGD. This included observing and working closely with a reproductive endocrinologist at a fertility clinic, observing surgical procedures, observing embryos being created and cryopreserved in a laboratory, and interviewing women/couples who used PGD. I allowed the participants to direct the analysis of their discourse. By doing so, the most salient aspects as well as the definitions assigned to those aspects by the participants became visible. I found that women/couples used PGD to get the child they desired, whether that was their biological child or a child of a specific gender. I also found that the destruction of the embryos was the most troubling aspect of PGD for the users. And thirdly I found that going through a PGD cycle is arduous both physically and emotionally regardless of the reason for using PGD. This dissertation will contribute to the conversations regarding the use of the NRTs. The novel information PGD provides about an embryo along with the timing of this information makes using PGD different from using any other NRT. Women are now asked to make decisions about the fate of their embryo, which could ultimately become their child, while the embryo is outside of their body. Prior to this, women made decisions based on genetic information while pregnant. Now women's pregnancy experience is more closely related to men's experience.
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