Editors’ Note

What are the experiences and concerns of those who have had genetic testing? The narrative symposium, “Patient and Research Participant Experiences with Genetic Testing,” is comprised of personal stories from 12 people who have participated in genetic testing (for themselves or as parents of those being tested) for medical or research reasons or out of curiosity. These stories primarily present the point of view of the so–called “early adopters” of genetic testing. This may help to explain why the stories often relate experiences quite different from those that ethicists and experts have worried people might have. The commentators explore these differences and offer some explanations for them, while calling for further narrative research into the topic.

The editorial office, with the help of various experts, wrote the call for stories and invited the three commentators for this symposium.

The research article in this issue, “Physician Religion And End–Of–Life Pediatric Care: A Qualitative Examination Of Physicians’ Perspectives,” by Lori Brand Bateman and Jeffrey Michael Clair delves into how the religion or spirituality of a physician influences the communication between the physician and the parents of children at the end of life. They used grounded theory in the design and analysis of their study. They found that the physicians they interviewed used their religious or spiritual beliefs not only to assuage their own emotional distress but also to support and help the patients and their families.

The first case study, by Carol Bayley, is “System Failure: No Surgeon To Be Found.” This case study looks at the tragic case of a woman who died in the emergency room because no surgeon could be found to stop the bleeding from her injuries. This case points out how the call system can be inadequate and how physician fear of law suits may contribute to the problem. The author offers possible responses to avoid future cases of this nature.

Our second case study, “Ethical Dilemmas Relating to the Management of a Newborn with Down Syndrome and Severe Congenital Heart Disease in a Resource–Poor Setting,” by Ama K. Edwin, Frank Edwin, and Summer J. McGee brings the reader into the heartrending decision–making process for treatment of newborns with disabilities in Ghana, a resource–constrained area. Given that children with Down syndrome can live a fulfilled life, should the treatment of such a child with an atrioventricular canal defect be considered morally obligatory, even in a resource–constrained area? Do the parents’ concerns about the quality of life for such a child and request that such reparative surgery not be done carry more weight in a resource–constrained nation?

News about Narrative Inquiry in Bioethics

For a list of current Calls for Stories and Author Guidelines, please visit www.nibjournal.org.