The Ethics Blog

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

Tag: research subject (Page 1 of 2)

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 […]

Online course in research ethics, spring 2016

Anyone who manages research also needs to be able to reflect on research. Not only the researchers themselves, but also funding bodies, journal editors, members of research ethics committees, administrators, journalists, organizations, politicians, and others. How do you act if you suspect research misconduct, and what is it? What are the ethical and legal regulations […]

Dynamic consent in biobank research: better than broad consent?

Biobanks make contributing to medical research easy: easier than when the research is performed on living human bodies. I simply donate my sample and consent to storage for certain kinds of future research, under specified conditions like that the research is ethically reviewed and the sample is coded so that it cannot be traced to […]

An ape genius, or just an ordinary talking ape?

In 2001 I travelled to Atlanta, where Sue Savage-Rumbaugh then worked with the language-competent bonobos Kanzi and Panbanisha. A question I travelled with concerned the linguistic tests that I had seen in a TV-documentary, Kanzi, an ape of genius. In these tests, the ape responds to requests in spoken English, uttered by an experimenter who […]

Project Nim: a tragedy that was interpreted as science?

Last week I wrote about the significance of negative results in science. This week I saw one of the saddest documentaries I’ve ever seen, featuring the tragic context of an often cited negative result in science. The documentary, Project Nim (2011), was about the psychologist Herb Terrace’s attempt in the 1970:s to teach American sign […]

How unspecific is broad consent?

In response to an informative article on personalized medicine and biobanking in Nature Biotechnology, a recent letter to the Editor defends broad consent for biobanking. The three letter writers emphasize the patient and donor perspective: “…patient donors actually express concern that study-specific consent can be burdensome and impede research.” Given these donors’ desire to give so-called broad […]

Henrietta Lacks and the power of rhetoric

Paradoxically, the victim can have the most powerful position, namely, as a “rhetorical figure.” I sense this rhetorical power in Rebecca Skloot’s bestselling book, The Immortal Life of Henrietta Lacks. I think less freely under the spell of this rhetoric. My thoughts are not allowed to discover new aspects of things. Questions are being silenced […]

Protecting children: through research or from research?

Children pose a dizzyingly difficult problem for research ethics. One of the most important tasks of research ethics is the protection of human research participants. This significant aim is realized above all through the requirement of proper information and consent procedures. But children often cannot be protected though these means. They are too young to […]

Can infrastructure for biobank research make ethical notions obsolete?

In a comment to what I posted earlier about the decision of the Swedish Data Inspection Board to stop LifeGene, Åke Thörn asks what I mean by saying that “LifeGene represents a new reality in the making.” Since the question has deep interest, I want to answer it here, in a new post. I will […]

The Swedish Data Inspection Board stops large biobank

Swedish biobank research suffered serious defeat last week. The Swedish Data Inspection Board decided that the ongoing collection of biological samples and health data to the large biobank LifeGene is against the law. Karolinska Institutet (that runs LifeGene) must now stop collecting further data and is not allowed use already collected data. The reason for […]

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