The risk of re-identification versus the need to identify individuals in rare disease research View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2016-11

AUTHORS

Mats G Hansson, Hanns Lochmüller, Olaf Riess, Franz Schaefer, Michael Orth, Yaffa Rubinstein, Caron Molster, Hugh Dawkins, Domenica Taruscio, Manuel Posada, Simon Woods

ABSTRACT

There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers. More... »

PAGES

1553-1558

Identifiers

URI

http://scigraph.springernature.com/pub.10.1038/ejhg.2016.52

DOI

http://dx.doi.org/10.1038/ejhg.2016.52

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1005479438

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/27222291


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Download the RDF metadata as:  json-ld nt turtle xml License info

HOW TO GET THIS DATA PROGRAMMATICALLY:

JSON-LD is a popular format for linked data which is fully compatible with JSON.

curl -H 'Accept: application/ld+json' 'https://scigraph.springernature.com/pub.10.1038/ejhg.2016.52'

N-Triples is a line-based linked data format ideal for batch operations.

curl -H 'Accept: application/n-triples' 'https://scigraph.springernature.com/pub.10.1038/ejhg.2016.52'

Turtle is a human-readable linked data format.

curl -H 'Accept: text/turtle' 'https://scigraph.springernature.com/pub.10.1038/ejhg.2016.52'

RDF/XML is a standard XML format for linked data.

curl -H 'Accept: application/rdf+xml' 'https://scigraph.springernature.com/pub.10.1038/ejhg.2016.52'


 

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