- Editors’ Note
This issue completes the second volume of Narrative Inquiry in Bioethics. The narrative symposium, research article and case study in this issue focus on caring for children as parents and as health care professionals. Our commitment to publishing first person accounts of important experiences relevant to bioethics led us to consider the experiences of parents whose adult children have Autism Spectrum Disorders (ASD). Here they share their stories of life as their children transitioned to adulthood. The opportunities and challenges of adults with ASDs vary widely, as do the experiences of their parents.
Some of the prompts offered to authors to stimulate their stories included the following:
• How did available supports or services change during the transition period to adulthood?
• Do you think the transition to adulthood has been affected by your child’s level of functioning or other health problems?
• What do you or your child disclose to others about their disability?
• What advice would you give to parents of younger children with ASDs about the transition?
• Did you obtain formal decision–making authority (e.g., guardianship, conservatorship, power of attorney) for your child when they turned 18? Why or why not?
• What are the most surprising issues you encounter now?
This is our sixth symposium and the first where we have focused on the stories of parents or guardians. As with any set of first person accounts, these are the authors’ stories, but they involve others, including the adult children with ASD featured in the stories and their siblings, the authors’ spouses or partners, the caseworkers, educators and others. It would be impossible to include the perspectives of all those whose lives are part of a person’s story in one journal issue. The stories here are the parents’ stories, and there is much to be learned from parents, many of whom have been involved in creating educational and social opportunities, navigating support services, and planning for the future for many years. We are grateful for their willingness to share these very personal stories with us. We are also excited to present the four commentary articles in this issue and share their insights.
The research article and case study turn to the experiences of physicians who care for children. Katherine Boydell et al. report the results of in–depth interviews with pediatric physician– researchers, individuals who both provide health care for children and conduct research on children. The dual roles physicians play when they engage in clinical research and provide care simultaneously generate numerous ethical questions and challenges. This study explored the nature of those challenges and the ways in which physician-researchers manage them.
Finally, Mindy Statter offers a case study involving a three year old child raised as a female who, during surgery for an inguinal hernia, was found to be an XY male. In ‘Can we talk about sex?’, she explores a case in which she found testes rather than ovaries while performing surgery. As a young surgeon, Dr. Statter asked a seasoned pediatric endocrinologist whether to tell the mother and [End Page v] was advised not to disclose this information. What parents and patients should be told, when, how and by whom are important ethical concerns.
We would like to thank the contributors to this issue for their willingness to share their experiences and research with us. As we bring volume 2 of Narrative Inquiry in Bioethics to a close, we would like to express our gratitude to the members of our Editorial Board and all those who have served as peer reviewers for the journal. Finally, are most grateful to Susan DuBois, our managing editor without whom there would be no journal, and to the staff at the Johns Hopkins University Press who continue to support this journal with their talents and energy.
We are also deeply grateful to the BF Charitable Foundation for continued support and to Mid-America Transplant (MTS) Services for educational gifts that will help support volume 2 of Narrative Inquiry in Bioethics. Both non–profit corporations respect the journal’s need for editorial freedom and neither has previewed any content of any issues of the journal. [End Page...