Preimplantation genetic diagnosis: understanding what parents plan to tell their children about their conception

Over 10,000 babies have been born by PGD and PGS worldwide (Simpson, Prenatal Diagnosis 30(7): 682-695 2010). The experience of parents who have undergone this procedure and their children's well-being are documented, but no research to date has explored whether parents intend to tell their children how they were conceived and whether this raises special issues for them. PGD practitioners recommend research in this area as parents of children born by PGD increasingly ask questions pertaining to disclosure. We conducted 30 in-depth interviews with couples who have had a baby conceived by PGD. We explored what couples plan to tell their children about how they were conceived, when they plan to do this, and issues they anticipate may arise. The couples had a family history of a monogenic disorder or chromosome rearrangement. Six themes emerged which highlight key issues: (1) To tell or not to tell? (2) Primary reason for undergoing PGD, (3) The ideal time to tell, (4) Situations which may warrant earlier disclosure, (5) Words which parents might choose, and (6) Issues which parents anticipate may arise. We conclude that parents are likely to inform their children about PGD because there is an affected sibling or relative about whom they ask questions, and/or their children are carriers of a condition their parents feel obliged to tell them about. Parents felt they would benefit from access to a genetic counsellor at the time of disclosure and are optimistic about the future of reproductive technology for their children.