Review of patient decision‐making factors and attitudes regarding preimplantation genetic diagnosis

• Published in: Clinical genetics Vol. 94; no. 1; pp. 22 - 42
• Main Authors: Genoff Garzon, M.C., Rubin, L.R., Lobel, M., Stelling, J., Pastore, L.M.
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01-07-2018
• Subjects: Decision making; Diagnosis; Embryos; ethics; genetic counseling; Genetic screening; health attitudes; Information processing; knowledge; Patients; PGD; practice; preimplantation genetic diagnosis; psychology; reproductive endocrinology and infertility; genetic counseling; practice; psychology; decision making; reproductive endocrinology and infertility; preimplantation genetic diagnosis; PGD; ethics; health attitudes; knowledge
• ISSN: 0009-9163; 1399-0004
• DOI: 10.1111/cge.13174

The increasing technical complexity and evolving options for repro‐genetic testing have direct implications for information processing and decision making, yet the research among patients considering preimplantation genetic diagnosis (PGD) is narrowly focused. This review synthesizes the literature regarding patient PGD decision‐making factors, and illuminates gaps for future research and clinical translation. Twenty‐five articles met the inclusion criteria for evaluating experiences and attitudes of patients directly involved in PGD as an intervention or considering using PGD. Thirteen reports were focused exclusively on a specific disease or condition. Five themes emerged: (1) patients motivated by prospects of a healthy, genetic‐variant‐free child, (2) PGD requires a commitment of time, money, energy and emotions, (3) patients concerned about logistics and ethics of discarding embryos, (4) some patients feel sense of responsibility to use available technologies, and (5) PGD decisions are complex for individuals and couples. Patient research on PGD decision‐making processes has very infrequently used validated instruments, and the data collected through both quantitative and qualitative designs have been inconsistent. Future research for improving clinical counseling is needed to fill many gaps remaining in the literature regarding this decision‐making process, and suggestions are offered.