Public and Patients’ Perspectives Towards Data and Sample Sharing for Research
An Overview of Empirical Findings
Bibliographic Data
| ID | 16810997 |
|---|---|
| Authors | María C Sánchez (0000-0002-8523-9218, Instituto de Salud Carlos III, corresponding author), Juan Carlos Hernández Clemente (Universidad Autónoma de Madrid), Fernando García López (0000-0002-4802-2650, Instituto de Salud Carlos III), Fernando J García López |
| Year | 2023 |
| Volume | 18 |
| Issue | 5 |
| Pages | 319-345 |
| Publication date | 2023-12-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Journal of Empirical Research on Human Research Ethics (JOURNAL) |
| Journal identifiers | ISSN: 1556-2646 • E-ISSN: 1556-2654 |
| Publisher | SAGE Publications (PUBLISHER • US) |
| DOI | 10.1177/15562646231212644 |
| PMID | 37936410 |
| OpenAlex | W4388495791 |
| Language | EN |
| Citations received | 1 |
| References cited | 75 |
We aimed to review the attitudes and perspectives of the public and patients towards the sharing of data and biospecimens for research and to identify common dimensions, regardless of setting. Our review included systematic, scoping or thematic reviews of empirical studies retrieved from Medline (PubMed interface), Web of Science, Scopus, ProQuest and Cochrane Reviews. The main themes identified and synthesised across the 14 reviews were readiness and motivations; potential risks and safeguards; trust, transparency and accountability; autonomy and preferred type of consent; and factors influencing data and biospecimen sharing and consent. Sociodemographic factors and research and individual context remain relevant influencing factors in all settings, while preferences for types of consent are highly heterogeneous. Trusted environments and adapted consent options with participant engagement are relevant to improve research participation
Accountability · Alternative medicine · Autonomy · Biobank · Data extraction · Data sharing · Empirical research · Informed consent · Medical education · MEDLINE · Political science · Qualitative research · Research ethics · Scopus · Sociology · Thematic analysis · Ethics in Clinical Research · Medicine · Mental Health and Patient Involvement · Patient-Provider Communication in Healthcare · Psychology
Summarizing systematic reviews
The concept of ‘vulnerability’ in research ethics
The ‘Expiry Problem’ of broad consent for biobank research - And why a meta consent model solves it
Genetic Data Aren't So Special
Broad versus Blanket Consent for Research with Human Biological Samples
Rationale and Standards for the Systematic Review of Qualitative Literature in Health Services Research
Storylines of research in diffusion of innovation
Informed Consent in Asymmetrical Relationships
Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research
Ethical sharing of health data in online platforms – which values should be considered
Resisting big data exploitations in public healthcare
| Citations per year | 1 |
|---|---|
| Citation span | 2026 - 2026 (1) |
| Highly cited | No |