The decision-making process, experience, and perceptions of preimplantation genetic testing (PGT) users
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ASSISTED REPRODUCTION TECHNOLOGIES
The decision-making process, experience, and perceptions of preimplantation genetic testing (PGT) users Shachar Zuckerman 1,2 & Sigal Gooldin 3 & David A. Zeevi 4 & Gheona Altarescu 1,2,4 Received: 10 October 2019 / Accepted: 21 May 2020 # Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Purpose The decision to undergo preimplantation genetic testing (PGT) entails a variety of personal and societal variables. Although PGT technology is widely accepted and used, few studies have queried the motives and concerns of PGT users; moreover, in-depth qualitative data regarding the PGT experience is scant. Methods In order to explore and analyze the experience, concerns, expectations, and attitudes toward the PGT technique and its implications, semi-structured interviews were conducted in a single tertiary medical center with 43 Israeli PGT users for HLA matching and autosomal dominant, autosomal recessive, and X-linked genetic disorders. Results The primary considerations in choosing PGT were prevention of birth of a child who would suffer a terminal or chronic disease as well as abrogation of a familial genetic condition. Religion played a decisive role in accepting PGT as an antenatal option. Regarding satisfaction with the PGT experience, many interviewees highlighted the need for greater attention to be given to potential stages of failure throughout the procedure and the need for emotional support. Our clinical results regarding implantation rate and cumulative live birth rate are 38–40% and 27–30%, respectively. Conclusion This survey broadens understanding of the specialized needs of women, couples, and minority groups undergoing PGT and underscores the relevance of counseling services for PGT users. Keywords Preimplantation genetic testing . PGT users . Reproductive decision-making . Experiences . Qualitative research
Introduction Recent advances in the field of molecular biology have led to the discovery of the genetic basis for various conditions. These developments, coupled with the rise of preimplantation genetic testing (PGT), first introduced in 1990 [1], have expanded antenatal options for mutation carriers who desire a biological child not affected by the genetic condition they carry. Moreover, since PGT obviates the need for pregnancy
* Shachar Zuckerman [email protected] 1
Shaare Zedek Medical Center- Medical Genetics Institute, Jerusalem, Israel
2
Hadassah Medical School, Hebrew University , Jerusalem, Israel
3
Department of Sociology and Anthropology, Hebrew University, Jerusalem, Israel
4
Shaare Zedek Medical Center- Preimplantation Genetic Unit, Jerusalem, Israel
termination (TOP), for some sectors, this is the only relevant option for prenatal diagnosis (PND) [2, 3]. However, PGT is not an unencumbered solution. Among the issues are the complexities of the associated in vitro fertilization (IVF) procedure, especially for those with no fertility problems, the risk for misdiagnosis [4], the possible damage to the
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