Welcome to the Wilfond Lab

Dr. Wilfond, his collaborators, research team members and trainees have made key contributions supporting the experience of families of children with profound disabilities; understanding the impact of newborn screening, carrier testing and genetic testing on children and families; and developing ethical approaches to conducting research on medical practices. He has more than 25 years of experience as a research ethics consultant and contributed to the development of this emerging practice through leadership, scholarship, and service. His current projects include improving the experience of families of children with trisomy 13 and 18 navigating our health care system; informed consent for gene therapy research with people with cystic fibrosis; and decision-making for parents considering tracheostomy and home mechanical ventilation.

One cross-cutting approach across his teams’ projects is developing methods to communicate about complex issues to allow people to engage with the information, whether to express their perspectives on the issues to inform policies or to support high-quality decisions about health care or research. For close to a decade, he and his collaborators have worked with Booster Shot Media, a creative communications team, to develop engaging audiovisual materials, including web tools, comics and videos which have been integrated into many research projects.