Raising Ethics: Parents of Critically Ill Children Taking the Lead in Scientific Research

• In Event: Citizen Science Politics and Practices II

Abstract

Citizen science, the phenomenon of lay participation in research, is increasingly popular but key questions remain about the ethical standards that should apply. In this paper, we focus on a subset of citizen scientists, the parents of ill children who lead research and scientific collaborations. Such groups have been successful in attracting resources, government attention, and research to diseases such as NGLY-1 deficiency, Niemann-Pick Type C disease, and Sanfilippo syndrome. (Amy Dockser Marcus, Wall Street Journal, November, 2013, www.wsj.com/trials) However, ethical tensions often arise when parents and scientists try to work together, particularly due to the conflict between the urgent demand for treatment on the part of parents and an often greater reluctance by scientists to proceed without first collecting substantial evidence of safety. We argue that the current framework for research ethics is constructed for scientific inquiry where the roles and responsibilities of all participants are more clearly defined and does not sufficiently address the key ethical dilemmas of parents and scientists who want to produce scientific knowledge as partners. (Vayena, et al. "Research by participants: a new social contract for a new kind of research", Journal of Medical Ethics, April, 2015, Mandl K, Kohane I, "Time for a Patient-Driven Health Information Economy?, New England Journal of Medicine, January 2016) We underline the need to study and better understand potential differences in their moral concerns, which should inform an ethical framework that accounts for novel perspectives and offers a way to resolve moral tensions when they arise.

Authors

• Amy Dockser Marcus, Harvard Medical School

• Isaac Kohane, Harvard Medical School

• Effy Vayena, University of Zurich