The Ethics Blog

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

Tag: register-based research (Page 2 of 5)

Identifying individuals while protecting privacy

Research ethics is complex and requires considering issues from several perspectives simultaneously. I’ve written about the temptation to reduce research ethics to pure protection ethics. Then not as much needs to be kept in mind. Protection is the sole aim, and thinking begins to resemble the plot of an adventure film where the hero finally […]

Critique of the motivation for dynamic consent to biobank research

Biobank research has undeniably challenged research ethics and the requirement for informed consent. We are after all dealing with collection of biological samples for future, yet unspecified research. Thus, one cannot give donors specific information about the research in which their samples will be used. It might seem like asking them to consent to unknown […]

Fourth issue of our newsletter about biobanks

Now you can read the fourth newsletter this year from CRB and about ethical and legal issues in biobanking: Biobank perspectives: current issues in biobank ethics and law The newsletter contains three news items: Moa Kindström Dahlin describes the work on ethical and legal issues in the European platform for biobanking, BBMRI-ERIC, and reflects on […]

Open data access is regulated access

We usually associate open access with the publication of scientific articles that anyone with internet access can read, without price barrier. The concept “open access” is now being used also for research data. I have written about this trend towards open data earlier on the Ethics Blog: Openness as a norm. In many cases, research […]

Scientists shape how the media portray synthetic biology (by Mirko Ancillotti)

Most of us learn about scientific developments through the media. Journalists and newspaper editors not only select what to bring to public attention but also the way the contents are conveyed. But how can we be sure that what they report is well researched? There are some new studies on how media portray synthetic biology […]

Interesting Big Data-symposium on video

Many posts on the Ethics Blog are about how new possibilities to collect and process large amounts of data change the horizon for medical research. But “Big Data” makes its entry also in the humanities and social sciences. How does the horizon change there? How is the understanding of humans and of society affected when […]

Laboratories interpret genetic test results differently

A new study suggests that the results of genetic tests are not always as reliable as we want to believe. A comparison between laboratories providing these tests shows that the same genetic variant can be interpreted differently. A single gene variant can thus be interpreted as an increased risk of breast cancer by one laboratory, […]

Second issue of our newsletter about biobanks

Now you can read the second newsletter this year from CRB and Biobank perspectives: current issues in biobank ethics and law The newsletter contains four news items: 1. Anna-Sara Lind presents a new book, Information and Law in Transition, and the contributions to the book by CRB researchers. 2. Anna-Sara Lind describes the situation […]

The Swedish Data Protection Authority rejects extension of temporary law on registry research

Since the new Swedish law on research databases is delayed, there is a proposal to extend the current temporary law on certain registries for research about what heredity and environment mean for human health (until December 31, 2017). The Swedish Data Protection Authority rejects extension, because major deficiencies noted previously have not been addressed and […]

Experts on assignment in the real world

Experts on assignment in the real world cease in part to be experts. Just consider computer experts who create a computer system for the tax authorities, or for a bank, or for a hospital. In order for these systems to work on location, the computer experts need to be open to what they don’t know […]

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