From information to follow-up: Ethical recommendations to facilitate the disclosure of amyloid PET scan results in a research setting

Abstract

In the field of Alzheimer's disease research, the use of biomarkers such as amyloid positron emission tomography (PET) has become widespread over a relatively brief period of time. There is an increasing tendency in research studies and trials to switch from no disclosure under any condition toward a qualified disclosure of individual research results, such as amyloid PET scan results. This perspective article aims to evaluate the possible need for a modification of the available recommendations on amyloid PET scan disclosure, based on recent empirical evidence obtained within the field of amyloid PET. This article also applies the International Guideline for Good Clinical Practice to the field of amyloid PET disclosure. Hence, we propose several recommendations to facilitate amyloid PET disclosure while minimizing possible risks of amyloid disclosure in a research context.

Keywords: Alzheimer's disease; Amyloid PET scan; Amyloid imaging; Disclosing information; Disclosure; Ethics; Recommendations.

Fig. 1

IDT CRP recommendations (This figure is based on the amyloid PET recommendations from Porteri et al and Harkins et al . However, this figure has been designed by the authors of this publication with the purpose of providing an overview schedule of the recommendations). Abbreviation: PET, positron emission tomography.