Thewas the first of its kind in the United States, created 10 years ago along with an annual conference. The tenth annual will be held later this month, and will bring together renowned leaders in the field of pediatric bioethics to discuss various ethical issues faced by researchers daily.
“Our conferences expose attendees to new perspectives and new ways of thinking,” said Dr. Douglas Diekema, director of education at the Treuman Katz Center.
Some of the topics that will be discussed at this year’s conference include:
- Parents of seriously ill children are often desperate for new therapies, even if in early phase trials. Is truly voluntary consent possible in such a situation?
- Social media allows researchers to “eavesdrop” on adolescent behavior. Should there be constraints on this type of investigation?
- Is it ever acceptable to conduct research in developing countries that would be considered inappropriate in the United States?
- If hospitals set up biobanks for research, what is needed to ensure public trust?
“Some people say that research should not be done in such a vulnerable patient population,” said, professor of bioethics at the Berman Institute of Bioethics at Johns Hopkins and a speaker at this year’s conference. “I think research should be done, even in high risk environments. We owe it to the families of the sickest among us to figure out what works best.”
Dr. Ben Wilfond, director of the Treuman Katz Center, said discussions on integrating research into clinical care are relevant to anyone who needs health care.
“The truth is many of the decisions providers make in health care are based on very little research,” Wilfond said. “Often we are making educated guesses based on past experience. We have to ask, is there a greater risk associated with participating in a randomized trial as compared to the risks associated with the usual care that would be provided?”
The 2014 Conference: New Opportunities, New Challenges: Exploring the Ethical Boundaries of Pediatric Research will take place July 18-19 at the Bell Harbor International Conference Center in Seattle. The conference is open to the public. To register,.
A live webcast of the conference can also be viewed online.