PGD patients' and providers' attitudes to the use and regulation of preimplantation genetic diagnosis

Abstract

Preimplantation genetic diagnosis (PGD) providers and patients have a vested interest in policy related to the use and regulation of PGD. To understand their experiences and attitudes, 32 in-depth interviews were conducted. Participants included 13 people at risk of transmitting a single-gene alteration to their children (10/13 had actually used PGD to try to have an unaffected child) and 19 PGD service providers (four nurses, five genetic counsellors, two reproductive endocrinologists, two geneticists, two physician-geneticists, two embryologists, and two laboratory directors). Virtually all participants supported the use of PGD to avoid severe, life-threatening genetic illness or to select embryos that are a tissue match for a sick sibling, but their attitudes varied significantly over the appropriateness of using PGD to avoid adult-onset genetic disease, to select for sex, or to select for other non-medical characteristics. There was disagreement within the PGD provider community about whether or not PGD is experimental. Participants were more concerned about overzealous government regulation of PGD creating barriers to access than potential abuses of the technology, and expected the PGD provider community to take the lead in ensuring that PGD is used for ethically appropriate purposes.

Conflict between values and technology: perceptions of preimplantation genetic diagnosis among women at increased risk for hereditary breast and ovarian cancer

“…A survey conducted by the HFEA found that, of those that agreed with PGD, the reasons for doing so were because it prevented further suffering within families where the condition is present and was a preferable technology to prenatal diagnosis [3]. Studies of the US general public, including PGD users, stress the importance of individual decision making regarding reproductive genetic technologies [19,31,32].…”

Preimplantation genetic diagnosis: public policy and public attitudes

“…The focus group and interview responses provide a detailed and textured portrait of peoples' attitudes (31)(32)(33).…”

Genetic testing of embryos: practices and perspectives of US in vitro fertilization clinics

“…In another case, after being told that both embryos transferred into her uterus were unaffected females, a patient underwent ultrasound and follow-up prenatal testing. She learned she was pregnant with an affected male (10).…”

“…In a series of interviews with patients undergoing PGD conducted by the Genetics and Public Policy Center, several women who became pregnant after single gene PGD reported having a misdiagnosis (10). One was told that the transferred embryos were carriers of the disease, but she subsequently learned during pregnancy from chorionic villus sampling (CVS) that the fetus was not a carrier.…”