NDLI: Amnestic MCI Patients’ Perspectives toward Disclosure of Amyloid PET Results in a Research Context

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Review of Nada Gligorov: Neuroethics and the Scientific Revision of Common Sense : Dordrecht: Springer, 2016. 169 pp. USD $99.99 (hardcover), $79.99 (ebook)

Neuroethics : Volume 10, Issue 1, April 2017

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

Content Provider	Springer Nature Link
Author	Vanderschaeghe, Gwendolien Schaeverbeke, Jolien Vandenberghe, Rik Dierickx, Kris
Copyright Year	2017
Abstract	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.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.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.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.
Starting Page	281
Ending Page	297
Page Count	17
File Format	PDF
ISSN	18745490
Journal	Neuroethics
Volume Number	10
Issue Number	2
e-ISSN	18745504
Language	English
Publisher	Springer Netherlands
Publisher Date	2017-03-21
Publisher Place	Dordrecht
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Ethics Amnestic MCI Clinical trial Qualitative research Disclosure of return of results Individual research results Biomarker Amyloid PET Belgium Neurology Neurobiology Neurosurgery Neuropsychology Neuroradiology
Content Type	Text
Resource Type	Article
Subject	Philosophy Neurology Health Policy Psychiatry and Mental Health

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1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
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8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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