Presentation Title: “Ethics research in public private-partnerships: in search of independence”

Abstract:

Alzheimer’s research has been famously clouded by conflicts of interests. No effective drug against Alzheimer’s have been developed in decades despite of billions of dollars and years’ worth of investment. Industry funding this research are blamed for trying to win back some of the investments by aiming to sell to drugs that are not proven to be effective and diagnostic tests that lack proven accuracy. In public-private partnerships, Alzheimer researchers working for a public organization are dependent on industry partners to succeed. In this presentation, I will map out potential conflicts of interest in public-private partnerships in Alzheimer research and the role of ethics research within these collaborations. I will take research on the clinical utility of diagnostic tests (amyloid PET imaging) for an earlier diagnosis of Alzheimer in public-private partnerships within the EU as a case study. Private partners in this field of research have a commercial interest in the outcome of this research because they sell the tests. Upon reflection, the methodology applied in these studies is inadequate because it steers towards harvesting results that portray a relatively positive image of the clinical utility of the diagnostic tests. I discuss the role of ethics researchers in this case, the institutional review board and the project’s ethics advisory board. More specifically, I discuss whether and how these parties should be expected to address conflicts of interests in public-private partnerships. I conclude by emphasizing the importance of providing an independent role for ethics researchers in public-private partnerships. The case discussed is relevant beyond the case of Alzheimer’s research, because it helps clarifying what can be expected from ethics research when conflicts of interest in the wider research community arise.