The Ethics Blog

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

Tag: data sharing (Page 1 of 2)

Global sharing of genomic data requires perspicuous research communication

To understand how our genes affect health and disease, drug reactions, and much more, researchers need to share vast amounts of data from people in different parts of the world. This makes genomic research dependent on public trust and support. Do people in general trust research? Are we willing to donate DNA and health information […]

Neuroethical reflection in the Human Brain Project

The emergence of several national level brain initiatives and the priority given to neuroscientific research make it important to examine the values underpinning the research, and to address the ethical, social, legal, philosophical, and regulatory issues that it raises. Neuroscientific insights allow us to understand more about the human brain: about its dynamic nature and […]

Global data sharing, national oversight bodies

Science has an international character and global research collaboration is common. For medical research, this means that health data and biological samples linked to people in one nation often are transferred to researchers in other nations. At the same time, the development of new information and communication technology increases the importance of people’s data protection […]

Acknowledging the biobank and the people who built it

Biomedical research increasingly often uses biological material and information collected in biobanks. In order for a biobank to work efficiently, it is important not only that the biological material is stored well. The material must also be made available to science so that researchers easily and responsibly can share samples and information. Creating such a […]

Research data, health cyberspace and direct-to-consumer genetic testing

We live in a global society, which means there are several actors that regulate both research and services directed at consumers. It is time again for our newsletter on current issues in biobank ethics and law. This time, Biobank Perspectives  lets you read about the legal aspects of direct-to-consumer genetic testing. Santa Slokenberga writes about […]

More biobank perspectives

If you did not get your fill during the Europe biobank week in Vienna, we give you more biobank related news in the latest issue of Biobank Perspectives, our newsletter on current issues in biobank ethics and law. This time, Moa Kindström Dahlin describes what BBMRI-ERIC’s new federated Helpdesk for ELSI-issues can offer. We also […]

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 […]

Fourth issue of our newsletter about biobanks

Now you can read the fourth newsletter this year from CRB and BBMRI.se 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 […]

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 […]

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