June 15, 2015
An article published in Seminars in Pediatric Neurology addresses the ethical issues arising while conducting research to find more effective treatments and potential cures of childhood illnesses. The authors believe that ethical conduct of research requires “minimising the inherent risks of research, especially when it involves vulnerable populations like children” and provide the example of DMD – a progressive and fatal disease with no FDA-approved treatment – to elucidate the ethical complexities of conducting research on children.
The authors note that gene therapies are viewed by many in the DMD community with great promise and therefore many parents have hope for direct medical benefits even though the goal of research could be to explore or discover generalisable knowledge especially in early-phase gene therapy trials. This raises concern for the therapeutic misconception if it is not properly communicated to the parents. Therefore the authors believe that “effective communication by physician-investigators is a prerequisite to enable adequate and fully informed decision-makers in these cases wherein they refrain from confusing language that conflates clinical care and research and avoid suggestions of direct benefit.”