ETHICS THINK TANK
The Ethics Think Tank team explores the potential ethical issues charities face when funding research and the Best Management Practices (BMPs) they use in dealing with those issues.
During the CAC2 Annual Summit in 2017, several members of the CAC2 community began discussing the topic of ethics as it affects non-profit organizations when funding research and clinical trials. That conversation led to the inclusion of a bioethicist on 2018 Summit program.
Dr. Yoram Unguru, pediatric oncologist and bioethicist from the Herman and Walter Samuelson Children’s Hospital at Mt. Sinai and the Johns Hopkins Berman Institute of Bioethics delivered the Keynote address at the 2018 Annual Summit. His talk inspired further discussion within the Research Interest Group breakout session that followed, as members further probed the relationships among pediatric cancer charities, the clinical researchers who benefit from their funding, and the patients for whom those charities advocate.
Upon further exploration of the topic, it was discovered that the literature has little to say about what obligations, if any, charitable organizations have when sponsoring pediatric oncology clinical trials. Nor is consideration given to how they might cultivate ethically robust partnerships between patients and relevant stakeholders within the pediatric cancer community. This gap presented an opportunity for CAC2 to become a thought leader in the area. The group set as its goal to study these issues and produce a paper that would be a novel contribution to the literature and a help to the community. The Ethics Think Tank Working Group engaged Vasiliki Nataly Rahimzadeh, PhD, an applied bioethics scholar in the Stanford Center for Biomedical Ethics to assist with the process of refining the project goals and performing the systemic literature review that enabled us to explore the current ethical landscape around pediatric cancer clinical trial funding by nonprofit organizations.
Ethics Think Tank Literature Review Process
The Ethics Think Tank Working Group of the Coalition Against Childhood Cancer conducted a systematic review of the literature to answer this four-part questions:
What are the ethical obligations of charitable organizations as they relate to funding clinical trial research to i) patients/families, ii) researchers, iii) donors, and iv) industry and academic clinical trials sponsors?
The review revealed several practices that nonprofit organizations should consider when making research grants and supporting drug development in pediatric cancer. They include:
- Articulating and adhering to their mission and values;
- Maintaining open communications with researchers and patient communities; and
- Identifying areas of inappropriate donor influence.
These themes inform practices at every stage of the pediatric cancer research lifecycle, from the scientific advisory step through to the dissemination of trial results and public communication. At a minimum, nonprofits and charities should:
- Select trials that meet the highest ethical and scientific rigor;
- Identify and disclose all real and perceived conflicts of interest; and
- Mandate regular reporting of all trial progress and open access results reporting.
The next phase of this project will draw on extant resources and develop new resources to assist non-profit research funders as they strive to support drug development in pediatric cancer ethically.
If you have resources, questions or requests, please share them at ! We invite you to contribute to the next phase of this project.
We would like to recognize the support of Steve Passagno and the Elaine Roberts Foundation who made this project possible.