Alexandra Soulier

• CNRS

Purpose The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gat...

Background Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods We analyse the ‘Your DNA, Your Say’ onl...

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such p...

Background: A better insight into older adults' understanding of and attitude towards cognitive disorders and their prevention, as well as expectations and reasons for participation in prevention trials, would help design, conduct, and implement effective preventive interventions. This qualitative study aimed at exploring the knowledge and percept...

Biobanks are not new. However, the scope of their application is growing, especially in genomics. Biobanks are also currently being reorganized to enable more genomic samples to be made available for different types of studies. Some future uses of the biobanks cannot be anticipated.

Objectives: To explore older adults' reasons for participating in a multinational eHealth prevention trial, and compare motivations between countries. Design: Cross-sectional mixed methods research using quantitative and qualitative approaches (the ACCEPT-HATICE study). Setting and participants: Substudy conducted during the recruitment phase...

The term “genetic load” first emerged in a paper written in 1950 by the geneticist H. Muller. It is a mathematical model based on biological, social, political and ethical arguments describing the dramatic accumulation of disadvantageous mutations in human populations that will occur in modern societies if eugenic measures are not taken. The model...

Dans le champ de la recherche en génomique, comme dans d'autres domaines très informatisés, les bases de données et les biobanques sont organisées en infrastructures. Ce nouveau modèle organisationnel doit permettre de soutenir l'effort technique et collaboratif requis pour traiter des Big Data, c'est-à-dire des jeux de données trop volumineux et c...

Interdisciplinary research and teaching often present similar challenges to investigators and teachers in higher education settings. Capturing and harnessing disciplinary knowledge from different fields to strengthen the process is desirable. However, in practice, this may be difficult to achieve. In this paper we set out a methodology developed in...

Genomic technologies are developing at a time when greater public involvement in research and clinical governance is sought. To this end, empirical bioethics studies, although conceptualized as academic endeavors, may draw on the inclusion of lay people to justify informing policy. Doing so, they face similar concerns as those addressed to public c...

Le terme de biobanque désigne une collection d’échantillons biologiques associés à des données personnelles, destinée à servir la recherche scientifique. Les pratiques de recueil et de conservation du matériel biologique sont en constante évolution. Elles s’adaptent à la fois aux contextes changeants des institutions scientifiques, aux innovations...

Under the auspices of a multi-national European scientific project involving whole genome sequencing, GEUVADIS, we set out to investigate the attitudes of the participating scientists of having their own genome sequenced. The views of such researchers on this subject have not been fully explored before and we utilized questionnaires and discussion...

The European Journal of Human Genetics is the official Journal of the European Society of Human Genetics, publishing high-quality, original research papers, short reports, News and Commentary articles and reviews in the rapidly expanding field of human genetics and genomics.

This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people's engagement with biobanks; concerns about privacy and data security, and trust in the...