European survey: citizens' attitudes on personalized medicine, genetic testing and health data sharing - design and delivery.

European Union health data privacy health data-sharing healthcare policy personalized medicine public engagement

Journal

Personalized medicine
ISSN: 1744-828X
Titre abrégé: Per Med
Pays: England
ID NLM: 101238549

Informations de publication

Date de publication:
04 Jul 2024
Historique:
medline: 4 7 2024
pubmed: 4 7 2024
entrez: 4 7 2024
Statut: aheadofprint

Résumé

In the transformative landscape of healthcare, personalized medicine emerges as a pivotal shift, harnessing genetic, environmental and lifestyle data to tailor medical treatments for enhanced outcomes and cost efficiency. Central to its success is public engagement and consent to share health data amidst rising data privacy concerns. To investigate European public opinion on this paradigm, we executed a comprehensive cross-sectional survey to capture the general public's views on personalized medicine and data-sharing modalities, including digital tools and electronic records. The survey was distributed in eight major European Union countries and the results aim at guiding future policymaking and trust-building measures for secure health data exchange. This article delineates our methodological approach, whereby survey findings will be expounded in subsequent publications. [Box: see text].

Autres résumés

Type: plain-language-summary (eng)
[Box: see text].

Identifiants

pubmed: 38963136
doi: 10.1080/17410541.2024.2342770
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1-4

Auteurs

Francesco Andrea Causio (FA)

Section of Hygiene, Department of Life Sciences & Public Health, Università Cattolica del Sacro Cuore, Rome, 00168, Italy.

Flavia Beccia (F)

Section of Hygiene, Department of Life Sciences & Public Health, Università Cattolica del Sacro Cuore, Rome, 00168, Italy.

Loes Lindiwe Kreeftenberg (LL)

Section Community Genetics, Department of Human Genetics & APH research institute, Amsterdam UMC, location Vrije Universiteit, Amsterdam, 91105, The Netherlands.

Giovanna Elisa Calabrò (GE)

Section of Hygiene, Department of Life Sciences & Public Health, Università Cattolica del Sacro Cuore, Rome, 00168, Italy.

Roberta Pastorino (R)

Section of Hygiene, Department of Life Sciences & Public Health, Università Cattolica del Sacro Cuore, Rome, 00168, Italy.

Stefania Boccia (S)

Section of Hygiene, Department of Life Sciences & Public Health, Università Cattolica del Sacro Cuore, Rome, 00168, Italy.

Carla van El (CV)

Section Community Genetics, Department of Human Genetics & APH research institute, Amsterdam UMC, location Vrije Universiteit, Amsterdam, 91105, The Netherlands.

Classifications MeSH