The Bioethics Program

Biomedical research and clinical care, especially for pediatric patients, is medically and ethically complex. The Bioethics Program at St. Jude Children’s Research Hospital aims to elucidate the challenges faced by patients, families, clinicians and researchers. The multidisciplinary core team explores how to best approach clinical research design to minimize negative impact on those involved and improve outcomes.

The Bioethics Program at St. Jude has two key research roles. The first role is consultative; it plays a key role in helping researchers, clinicians, patients and families understand the ethical challenges of experimental treatments in a clinical research setting. 

The Bioethics Program also conducts its own research. Their research focuses primarily on understanding how best to design clinical trials for rare diseases, refining patient and family education materials, and improving informed consent processes. 

Researchers in the program employ a mix of quantitative and qualitative methods to identify and characterize core issues. They then use their findings to develop recommendations for ethical conduct within research studies as well as design and implement tools to facilitate better patient education and informed consent for research protocols. 

Members of the Bioethics team are dedicated to improving patient education so that they may give informed consent to treatment. A few of the projects aimed at this include: