NDLI: Ethical issues in genomics research in persons with Alzheimer’s Disease/Alzheimer’s Disease-related dementia (AD/ADRD): a systematic review

Content Provider	Springer Nature : BioMed Central
Author	Yakubu, Aminu Adedeji, Isaac Maduka, Oluchi C. Jegede, Ayodele Adebamowo, Clement
Abstract	Introduction Given the growing number of Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) genomics research projects and the vulnerabilities of study participants, it is critical to evaluate the literature on the ethical challenges in such studies to ensure high ethical standards. Methods We conducted a systematic review of the literature on ethical issues in AD/ADRD genomics research. We searched Embase, PsycINFO, CiNAHL, Scopus, and Ovid Medline for empirical and normative papers published in peer-reviewed journals on the ethical issues involved in conducting genomics research among persons with AD/ADRD. We used ethical principles from an existing framework as a priori codes to categorize the ethical issues and adapted another framework of Dementia Research Ethical Issues (DREI) as subcategories for our synthesis. We used the 2021 PRISMA guidelines to guide our study. Results We screened 5,509 papers and included 27 of these papers in the systematic review after deduplication, title, and full-text review. The papers contained 109 ethical issues that were mapped against 42 out of 75 relevant DREIs. The highest number of DREIs were mapped to “respect for persons and communities”, “favorable risk-benefit ratio”, “informed consent” and “scientific validity”. The least mapped principles to the DREIs were “fair participant selection”, “independent review”, “social value”, and “collaborative partnership”. Conclusion Our review showed that there is a dearth of literature on the ethical principles of “fair participant selection”, “independent review”, “social value” and “collaborative partnership” in genomics research on AD/ADRDs. It is difficult to draw firm conclusions from the distribution of attention paid to specific principles because these may only reflect the concerns of AD/ADRD genomics research ethicists in high-income countries. There is need for more research on the ethics of AD/ADRD genomics research in low and middle-income countries for a more balanced account of the important ethical considerations in this field.
Related Links	https://bmcmedethics.biomedcentral.com/counter/pdf/10.1186/s12910-024-01141-w.pdf
Ending Page	20
Page Count	20
Starting Page	1
File Format	HTM / HTML
ISSN	14726939
DOI	10.1186/s12910-024-01141-w
Journal	BMC Medical Ethics
Issue Number	1
Volume Number	25
Language	English
Publisher	BioMed Central
Publisher Date	2024-11-25
Access Restriction	Open
Subject Keyword	Ethics Philosophy of Medicine Theory of Medicine Bioethics Alzheimer’s disease Genetics research Genomic research Ethical issues Theory of Medicine/Bioethics
Content Type	Text
Resource Type	Article
Subject	Issues, Ethics and Legal Aspects Health Policy Health (social science)
Journal Impact Factor	3/2023
5-Year Journal Impact Factor	3.1/2023

Sl.	Authority	Responsibilities	Communication Details
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
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
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

The full spectrum of ethical issues in dementia research: findings of a systematic qualitative review

Ethical issues in human genomics research in developing countries

Ethical considerations for biobanking and use of genomics data in Africa: a narrative review

Ethical arguments concerning human-animal chimera research: a systematic review

Mapping ethical issues in the use of smart home health technologies to care for older persons: a systematic review

Ethics education to support ethical competence learning in healthcare: an integrative systematic review

Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)

Preparing ethical review systems for emergencies: next steps

Research in disaster settings: a systematic qualitative review of ethical guidelines

Ethical issues in genomics research in persons with Alzheimer’s Disease/Alzheimer’s Disease-related dementia (AD/ADRD): a systematic review

Similar Documents

The full spectrum of ethical issues in dementia research: findings of a systematic qualitative review

Ethical issues in human genomics research in developing countries

Ethical considerations for biobanking and use of genomics data in Africa: a narrative review

Ethical arguments concerning human-animal chimera research: a systematic review

Mapping ethical issues in the use of smart home health technologies to care for older persons: a systematic review

Ethics education to support ethical competence learning in healthcare: an integrative systematic review

Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)

Preparing ethical review systems for emergencies: next steps

Research in disaster settings: a systematic qualitative review of ethical guidelines

Ethical issues in genomics research in persons with Alzheimer’s Disease/Alzheimer’s Disease-related dementia (AD/ADRD): a systematic review