The Ethics Blog

A blog from the Centre for Research Ethics & Bioethics (CRB)

Month: April 2013

Revised European data protection will make data about rare diseases even rarer

EU is currently discussing changes to the European privacy laws. The intention is to strengthen the protection of privacy and to give people more control over their data. The problem, which I highlighted on The Ethics Blog, is that the new proposal applies also to research. Presently there is an exception for scientific research about […]

Unhappy approach behind policy for incidental findings

Should individual research participants be informed if biobank researchers incidentally discover increased genetic disease risks through analysis of their samples? At a seminar, Jennifer Viberg recently discussed a well-known recommendation for when participants should be informed about incidental findings: Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations During the seminar it became increasingly […]

Morality as a problem

Friedrich Nietzsche made this enigmatic remark about moral philosophy: “In all ‘science of morals’ so far one thing was lacking, strange as it may sound: the problem of morality itself; what was lacking was any suspicion that there was something problematic here.” What did Nietzsche mean? He seems to have been thinking of a very […]

Don’t shoot at the patient (or at the messenger)

The newly proposed European Data Protection Directive overprotects research participants and exposes patients to greater risks of contracting illness and dying. Thus dramatically a recent article in The Lancet Oncology can be summarized, written by Mats G. Hansson at CRB together with Gert Jan van Ommen, Ruth Chadwick and Joakim Dillner. People who provide data […]

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