Ten years after the first ‘savior sibling’: Parental experiences surrounding the ethical, legal, and political issues of preimplantation genetic diagnosis

Heather works as a genetic counselor providing information and support to families of children with cancer and genetic diseases requiring bone marrow transplantation at the University of Minnesota. Her major areas of focus in research and teaching include genetic counseling, medical genetics, epidemiology of childhood cancers, as well as preimplantation genetic diagnosis (PGD). With a bioethics colleague, Dianne Bartels, she has conducted interviews with parents of children with Fanconi Anemia regarding their experiences living with the disease. PGD combined with HLA-typing was first used by families with Fanconi anemia to create sibling donors sometimes termed ‘savior siblings.’ To explore the actual experiences of parents ten years after the first use of this once highly controversial technology, Heather and Dianne will conduct a survey of parents of Fanconi Anemia children in the United States, the United Kingdom, Australia and Canada. Perceptions and beliefs about decision-making and experiences with the ethical, legal and psychosocial issues surrounding the use of this technology will be investigated. Recommendations for policies that address issues like access and health care coverage will be assessed. This data, when published, will address the theoretical bioethical arguments previously posed as well as influence health care clinicians and, hopefully, policy makers as they address the needs of these families and those facing similar circumstances.