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Home ELSI Knowledge Base

ELSI Knowledge Base

The ELSI Knowledge Base is our open-access resource platform containing information on ELSI-related matters relevant to biobanking. Here you will find practical guidance on specific ELSI topics. In need of ethical, legal, or societal guidance? Browse our articles below.

Our top picks for today

Topic

International data sharing: MTA, DTA

What to consider when drafting Material Transfer Agreements and Data Transfer Agreements.

Topic

Incidental Findings

Explore resources relating to the informed management of incidental findings

Latest content

Article

Digitalisation of Biobanks

Overview The digitalisation of biobanks refers to the transformation of traditional biobanking infrastructures into integrated digital ecosystems capable of collecting, managing, storing, sharing, and analyzing large volumes of biological and […]

Article

Vulnerability in Biomedical Research: a Broad Spectrum

Learn here about how biomedical research can interact with existing vulnerabilities or, even, create new ones Overview Vulnerability is a concept intended to protect individuals and groups who face an […]

Article

Reimbursement and Compensation to research participants

What to consider when deciding whether to reimburse and/or compensate research participants in clinical research Overview The practice of offering reimbursement and compensation to research participants in clinical research is […]

Article

Polygenic Risk Scores (PRS)

This article examines the ethical, legal, and social implications of polygenic risk scores by analyzing how their development and use raise challenges around fairness, representativity, validity, communication of probabilistic results, and health equity, with particular attention to the responsibilities of biobanks in recruitment, data governance, consent, return of findings, public trust, and benefit sharing.
Open filters

Topics

DPIAs (Data Protection Impact Assessments) (2) Biobanking with Children (2) Enhancing Patient Engagement in Oncology Research (1) Digital ELSI services for cancer research (1)

Challenges

Digitalisation of Biobanks Vulnerability in Biomedical Research: a Broad Spectrum Reimbursement and Compensation to research participants Ethics Advisors and Ethics Advisory Boards. Roles and Function in EU-funded Projects Preparation of a new project: what to do with data? Responses to data requests How to manage personal data in a new project

Keywords

paediatrics (2)
ELSI (7)

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