Amnestic MCI Patients' Perspectives toward Disclosure of Amyloid PET Results in a Research Context

Gwendolien Vanderschaeghe; Jolien Schaeverbeke; Rik Vandenberghe; Kris Dierickx

doi:10.1007/s12152-017-9313-z

Amnestic MCI Patients' Perspectives toward Disclosure of Amyloid PET Results in a Research Context

Neuroethics. 2017;10(2):281-297. doi: 10.1007/s12152-017-9313-z. Epub 2017 Mar 21.

Authors

Gwendolien Vanderschaeghe¹, Jolien Schaeverbeke^{2

3}, Rik Vandenberghe^{2

3

4}, Kris Dierickx¹

Affiliations

¹ Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35 Blok D Box 7001, 3000 Leuven, Belgium.
² Laboratory for Cognitive Neurology, Department of Neurosciences, KU Leuven, 0&N II, Herestraat 49 box 1027, 3000 Leuven, Belgium.
³ Alzheimer Research Centre KU Leuven, Leuven research Institute for Neurodegenerative Disorders, Leuven, Belgium.
⁴ Memory Clinic / Neurology, University Hospitals Leuven (UZ Leuven, Campus Gasthuisberg), Leuven, Belgium.

Abstract

Background: Researchers currently are not obligated to share individual research results (IRR) with participants. This non-disclosure policy has been challenged on the basis of participants' rights to be aware and in control of their personal medical information. Here, we determined how patients view disclosure of research PET results of brain amyloid and why they believe it is advantageous or disadvantageous to disclose.

Method: As a part of a larger diagnostic trial, we conducted semi-structured interviews with patients with amnestic Mild Cognitive Impairment (aMCI). Participants had the option to receive their brain amyloid PET scan result (i.e., their IRR). Interviews were conducted before they received their IRR.

Results: A total of 38 aMCI patients (100% of study participants) wanted to know their IRR. The two most frequently mentioned reasons for choosing IRR disclosure were to better understand their brain health status and to be better able to make informed decisions about future personal arrangements (e.g., inheritance tax, moving into a smaller house, end-of-life decisions, etc.). Emotional risk was mentioned as the primary disadvantage of knowing one's IRR. On the other hand, non-disclosure was considered to be emotionally difficult also, as patients would be uncertain about their future health condition.

Conclusions: Many patients diagnosed clinically with aMCI want to know their brain amyloid test results, even though this knowledge may be disadvantageous to them. Knowing what is going on with their health and the ability to make informed decisions about their future were the two principal advantages mentioned for obtaining their amyloid PET results. Because of the overwhelming consensus of aMCI patients was to disclose their brain amyloid PET scan results, researchers should strongly consider releasing this information to research subjects.

Keywords: Amnestic MCI; Amyloid PET; Belgium; Biomarker; Clinical trial; Disclosure of return of results; Ethics; Individual research results; Qualitative research.