Biobanking for neurodegenerative diseases: Challenge for translational research and data privacy

E Giannella, V Notarangelo, C Motta… - The …, 2023 - journals.sagepub.com
Biobanking has emerged as a strategic challenge to promote knowledge on neurological
diseases, by the application of translational research. Due to the inaccessibility of the central …

Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey

C Brall, C Berlin, M Zwahlen, E Vayena, M Egger… - BMJ open, 2022 - bmjopen.bmj.com
Objectives This article aims to measure the willingness of the Swiss public to participate in
personalised health research, and their preferences regarding data management and …

Biobanks in the low-and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study …

AS Abdelhafiz, M Ahram, ME Ibrahim, A Elgamri… - BMC Medical …, 2022 - Springer
Background Biobanks have recently been established in several low-and middle-income
countries (LMICs) in the Arab region of the Middle East. We aimed to explore the views of …

Can we know if donor trust expires? About trust relationships and time in the context of open consent for future data use

F Gille, C Brall - Journal of Medical Ethics, 2022 - jme.bmj.com
As donor trust legitimises research, trust is vital for research in the fields of biomedicine,
genetics, translational medicine and personalised medicine. For parts of the donor …

Oocyte biobanks: old assumptions and new challenges

P Tozzo - Biotech, 2021 - mdpi.com
The preservation of fertility is a clinical issue that has been emerging considerably in recent
decades, as the number of patients of childbearing age who risk becoming infertile for many …

[图书][B] What is public trust in the health system?

F Gille - 2023 - library.oapen.org
Trust is at the centre of the public and health system relationship. The public takes part in
trusted health system activities and its trust legitimises health system activities. Examples of …

[HTML][HTML] Ethical Considerations for Health Research Data Governance

M Maseme - Data Integrity and Data Governance, 2022 - intechopen.com
Research involving humans often generates considerable data irrespective of the context in
which the research is being conducted. This data must be protected from unauthorized …

Improving public trust in biobanking: Roundtable discussions from the 2021 ISBER Annual Meeting

BK Yadav, W Ng, H Vu, J Fachiroh… - Biopreservation and …, 2023 - liebertpub.com
Biobanking is a relatively newly recognized and innovative branch of science, which
includes the collection of samples and associated data from hospitals, diagnostic centers …

Identification of Good University Governance Principles in Society 5.0

S Santoso, SE Pramono… - International …, 2024 - proceeding.unnes.ac.id
Good governance is a critical aspect of effective public administration, significantly impacting
the quality of services provided to the community. This study aims to identify and implement …

Collection of human biological samples and personal data: a legal study for a trustworthy biobank governance

N Conditi - 2024 - amsdottorato.unibo.it
Research biobanks are collections of human biological samples and personal data on a
long-term basis for future scientific research purposes and, therefore, fundamental …