Mahsa Shabani & Pascal Borry in the European Journal of Human Genetics 26:149–156 (2018) Genetic data contain sensitive health and non-health-related information about the individuals and their family members. Therefore, adopting adequate privacy safeguards is paramount [...]
You wouldn’t guess it from the news, but scientists are in public favour the world over. “There is a sense of mourning among scientists who worry that the public doesn’t like them,” says social psychologist, [...]
Federal regulators approved the first direct-to-consumer test for the BRCA genes, which increase the risk of breast and ovarian cancer, the agency announced on Tuesday. To the article (Scientific American)
Science Europe published its report on the 2017 high-level workshop on "The Rationales of Open Science - Digitalisation and Democratisation in Research". A particular focus of the report rests on determining pathways to enable individuals [...]
consentris GmbH CEO Prof Nils Hoppe will speak alongside leading data protection experts from Germany, Austria and Switzerland at Privacy Ring 2018 on 14 March 2018. To the complete programme and registration
Eine Studie zeigt, dass deutsche Firmen nicht gut auf die neue Datenschutzverordnung vorbereitet sind. Von ihren Vorteilen sind sie auch nicht überzeugt. Zum Artikel auf gruenderszene.de
Some scientists might be surprised by a piece of good news buried in Science and Engineering Indicators, a massive report released by the U.S. National Science Board last month. Overwhelmingly, surveys showed, Americans think that [...]
On 22 February at 7pm, consentris CEO Professor Hoppe will speak about the future of consent at 12min.MED (Transformationswerk Hannover) (in German). Thema: "Fragen kostet nichts? Die Informierte Einwilligung gestern, heute und morgen..." Abstract: Ärzte [...]
Cluster randomised trials are an increasingly important methodological tool in health research but they present challenges to the informed consent requirement. In the relatively limited literature on the ethics of cluster research there is not [...]
The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that [...]