Creating Savior Siblings for Transplantation: Discrepancy Between Parental Wishes and Clinical Practice

Thirty percent of patients who need a hematopoietic stem cell transplant (HSCT) have an HLA-matched related donor. Many other patients find a suitably matched unrelated donor through one of the registries of volunteer donors available worldwide. However, some children (and especially children from ethnic minorities) will still not be able to secure a suitable donor. In these cases, parents may seek to have another child in order to create a matched sibling donor – often called a ‘savior sibling’. This practice is morally contentious and generates intense debate. A process is now available to assist parents in this endeavor. It involves three technologies that are proven, legal, available and in use – namely, in vitro fertilization, pre-implatation genetic diagnosis and HLA typing. There is currently no clinical consensus about whether (and if so, how) to advise parents about this option. A study has been conducted examining the attitudes of health professionals and parents concerning the creation of ‘savior siblings’, and of the relevant clinical practices. The study includes in-depth, semi-structured interviews with a range of health professionals involved in the care of children needing HSCT. Twenty-one interviews were conducted with practitioners in clinical genetics, genetic counseling, hematology, oncology, immunology, neurology, and nursing regarding knowledge about the combined technologies, clinical indications for their potential use, and ethical issues arising regarding savior siblings. Interviews were also conducted with ten parents who have been faced with decisions about HSCT for a sick child, to find out how much they know and understand about treatment options, to identify any issues they raise concerning the combined technologies, and discuss what information they expect from health professionals. All interviews were transcribed and analyzed using established qualitative methods to identify emergent themes. Major findings from the study include the following. Clinicians, including pediatric hematologists and oncologists, rarely discuss these technologies unless the parents raise the topic themselves. They do not discuss these combined technologies for a number of reasons including: lack of knowledge about the techniques (including cost and availability); doubts about their clinical utility; and the moral appropriateness of using these technologies to create a savior sibling. In the parental interviews, parents consistently reported wanting to know about all therapeutic options and overwhelmingly dismissed the ethical arguments raised against creating a savior sibling. Interestingly, despite concern about discussing this potential option with parents, when health professionals placed themselves in the position of a parent making treatment decisions for their children, they reported that they would also want full disclosure about available technologies. These finding are relevant to not only the combined technologies involved in creating a savior sibling but to any new drug or technology involved in hematology and transplantation. Discussions involving emerging or contentious technologies need to occur consistently in the clinical setting.