Rare Tumors: An Appeal for Justice

Abstract

While cancers with 40,000 or fewer diagnoses a year are considered rare, they make up about 25% of cancer mortalities. Despite this, rare cancers remain largely ignored by investigators because of insufficient research funding. Their neglect has been justified in the belief that a focus on common tumors will yield benefits for all tumors, including rare tumors. This however has not happened. One solution proposed to address this problem is to mobilize those diagnosed with rare tumors to advocate for research in rare tumors. But is it fair to place a burden of self-advocacy on some cancer patients but not on others? A better solution, proposed here, invokes a theory of justice developed by John Rawls, and offers an alternative statement of the ethical basis for involving human subjects in research and suggestions for restructuring the cancer research enterprise itself.