On March 10, 2014, we showed the documentary
in anticipation of our
10th Annual Bioethics Conference
in July 2014. Rare is a brilliant documentary that invites viewers into the world of living with a rare genetic disease, introduces the doctors studying rare diseases and offers an intimate window into the realm of clinical trials. Going all the way to Capitol Hill on the quest for increased awareness and research, Rare is an honest portrayal of what it means to have a rare disease, the role of patient advocates and successes and disappointments of clinical research. Rare was directed by
Dr. Maren Grainger-Monsen and Nicole Newnham
at the Stanford Center for Biomedical Ethics.
Dr. Holly K. Tabor
, assistant professor, Treuman Katz Center for Pediatric Bioethics, led a panel to discuss this important issue along with
Dr. Daniel Doherty
, associate professor, Developmental Pediatrics;
Dr. Bonnie W. Ramsey, director, Center for Clinical and Translational Research; and parents and advocates Dean Suhr, president, MLD Foundation; Teryn Suhr, executive director, MLD Foundation; and DeDe Van Quill, director, Foundation for Nager & Miller Syndromes.
This iteration of the Bioethics Film Series was made possible with the generous support of our vital co-sponsors: the
Center for Clinical and Translational Research
at Seattle Children's Research Institute, the
Center for Genomics and Healthcare Equality
at the University of Washington and the
Institute of Translational Health Sciences
Our first film,
, which was shown Sept. 16, 2013, is a powerful documentary that was nominated for a Student Academy Award. It was directed by Bay Area director and editor
, a recent graduate of the MFA program in documentary film and video at Stanford University, where she was the recipient of the Theodore and Frances Geballe Fellowship.
The small, tight-knit community of Vashon Island, Washington, has become a reluctant poster child for the growing debate around childhood vaccinations. This portrait of an island community digs beneath the surface to investigate the tensions between individual choices and collective responsibilities.
Dr. Douglas Opel
led a panel to discuss this important issue along with Drs.
Wendy Sue Swanson
; Vashon community member Celina Yarkin; and Janna Bardi from the Washington State Department of Health.