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

Dianne Bartels has worked as a nurse, a counselor, and health care administrator. She received a Master’s degree in Psychosocial Nursing and a Ph. D. in Family Social Science. For the past 25 years she has been a member of the faculty of the University of Minnesota Center for Bioethics. Her major focus areas in research and teaching have been clinical ethics, end of life care, and ethical and legal issues in genetic counseling. With a genetic counseling colleague, Heather Zierhut, she has conducted interviews with parents of children with Fanconi Anemia (FA) about their experiences from the time of genetic diagnosis until bone marrow transplantation. Parents identified their experiences with vitro fertilization and preimplantation genetic diagnosis (PGD) among stressors during the waiting period. To explore more about those experiences, they will conduct an international survey of parents of children with FA. The survey will address perceptions and beliefs that reflect their experiences with these technologies as well as their recommendations for policies that address issues like access and health care coverage. This data, when published, will influence health care clinicians and, hopefully, policy makers as they address the needs of these families.