A systematic literature review to identify ethical, legal and social
responsibilities of nonprofit organizations when funding clinical trials
in pediatric cancer
Abstract
Nonprofit organizations (NPOs) play critical roles as funding sources,
research partners, and disseminators of emerging drug developments in
pediatric cancer, yet the literature offers limited understanding or
guidance of ethical best practices and processes. We conducted a
systematic search for peer reviewed articles, commentaries, newsletters,
and white papers indexed in the PubMed and Web of Science databases to
identify the ethical, legal, and social responsibilities of NPOs to i)
patients/families, ii) researchers, iii) sponsors, and iv) donors when
funding clinical trials. Fifty-four articles met the inclusion criteria.
Minimizing conflicts of interest, ensuring transparent reporting of
trial endpoints, and communicating with families about trial
opportunities emerged as key themes. We identified critical gaps in the
literature related to negotiating research partnerships, setting trial
priorities and establishing best ethical practices in the emerging field
of venture philanthropy. Results informed points to consider for NPOs
when funding pediatric cancer clinical trials going forward.