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(Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2017)
Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized ...
(Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2016)
(Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2016)
Background: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general ...
(Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2021)
Background
Discrete Choice Experiment (DCE) is a well-established technique to elicit individual preferences, but it has rarely been used to elicit governance preferences for health data sharing.
Objectives
The aim ...
(Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2021)
Background: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable ...
(Journal article / Tidsskriftartikkel / AcceptedVersion; Peer reviewed, 2021)
COVID-19 has shown that international collaborations and global data sharing are essential for health research, but legal obstacles are preventing data sharing for non–pandemic-related research among public researchers ...
(Journal article / Tidsskriftartikkel / AcceptedVersion; Peer reviewed, 2021)
Background
The governance structures associated with health data are evolving in response to advances in digital technologies that enable new ways of capturing, using, and sharing different types of data. Increasingly, ...
(Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2019)
Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles ...
(Chapter / Bokkapittel / PublishedVersion; Peer reviewed, 2017)
(Journal article / Tidsskriftartikkel / PublishedVersion; Peer reviewed, 2019)
Purpose
Phenotype information is crucial for the interpretation of genomic variants. So far it has only been accessible for bioinformatics workflows after encoding into clinical terms by expert dysmorphologists.
Methods
Here, ...