The Ethics Blog

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

Tag: register-based research (Page 1 of 5)

Broad and deep consent for biobanks

A new article on consent for biobanks manages to surprise me. How? By pointing out what ought to be obvious! If we want to judge what kind of consent works best for biobanks, then we should look at today’s biobanks and not look back at more traditional medical research. The risks in traditional medical research […]

In-depth critique of dynamic consent

Biobanks are getting bigger and the human biological samples that are stored in the freezers have increasingly long-term utility for research. The samples can be used not only in one study, but also in several different studies. Not only in today’s research, but also in future research. This creates research ethical tensions. Ethics requires that […]

Risks of discrimination in population-based biobanks

Even good intentions can cause harm. Considerately treating certain groups as “vulnerable,” such as pregnant women and children, can cause discrimination against them. If we protect them from participation in clinical research, we know less about how they respond to medical treatments. They are therefore exposed to greater risks when they are patients in need […]

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 […]

Communicating risk in human terms

The concept of risk used in genetics is a technical term. For the specialist, risk is the probability of an undesired event, for example, that an individual develops some form of cancer. Risk is usually stated as a percentage. It is well known that patients have difficulties to access the probability notion of risk. What […]

Consent based on trust rather than information?

Consent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential […]

More biobank ethics and law

Biobank and registry research comes with particular sets of legal and ethical issues. We explore some of them in our Biobank Perspectives newsletter. In this issue, you can read about some of the challenges that arise when biobanking stem cells in relation to a new project on the legal and ethical aspects of using stem […]

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 […]

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