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

Month: March 2013

Two PhD positions at the Centre for Research Ethics and Bioethics

We are recruiting two new PhD students:

1. PhD position in the field of Research Ethics/Bioethics. This position has two possible research focuses:

2. PhD position in the field of bioethics/philosophy of mind. This position has the following possible research focuses:

  • (a) Conceptual and empirical analyses of the nature and function of consciousness in the light of modern neuroscience and philosophy of mind.
  • (b) How consciousness can be accessed neurotechnologically.
  • (c) Clinical studies of consciousness of patients with disorders of consciousness and ethical analyses of the results.

Read more about the PhD projects and the application in the links above. If you are interested we look forward to receiving your application no later than April 22, 2013.

Pär Segerdahl

We transgress disciplinary borders - the Ethics Blog

Biobank research on the Sámi people should be more transparent

Ethnicity is a sensitive issue, so sensitive that one might want to remain silent about it.

Anna Lydia Svalastog at CRB recently published an article about genetic research on the Sámi people in Sweden. She highlights ethical problems associated with the fact that the Sámi focus in these studies is not made transparent.

Svalastog was surprised to discover that 50 years of genetic research on the Sámi people was invisible in the biobank register at the Swedish National Board of Health and Welfare. The reason, she guesses, is that ethnicity is considered unacceptable as a basis for creating registers and biobanks.

Still, some registers and biobanks are in practice Sámi, since data collection was carried out in traditional Sámi areas like Karesuando. When Svalastog studied the way research was carried out she found further tendencies to downplay ethnicity, although it was central in practice.

The Sámi focus of the research was downplayed by a more neutral vocabulary of people living in certain geographic areas. Also the questionnaires downplayed ethnicity. Questions could instead concern livelihood, which, however, can function as an indicator of Sámi ethnicity, since reindeer herding is an exclusively Sámi occupation.

Ethnicity can be reconstructed from the answers, then, but in a manner that risks reinforcing old stereotypes, since many see themselves as Sámi without being reindeer herders.

I don’t think that Svalastog is opposed to biobank research about the Sámi people, but her point is that ethnicity, and the fact that the Sámi is a native people, must be made transparent. Otherwise it becomes difficult to discuss and handle the ethical problems that ethnicity can imply.

The article is published in New Genetics and Society. Svalastog highlights the importance of talking about ethnicity, because it is sensitive.

Pär Segerdahl

Minding our language - the Ethics Blog

Life scientists’ responsibility when their research has dual use

Do life scientists have moral responsibility when their research can be used not only to do good (like preventing pandemics) but also to harm others (like developing biological weapons)?

It could be tempting to think that researchers’ only responsibility is the advancement of scientific knowledge. The use and practical application of that knowledge is the responsibility of others.

The September 11 attacks made that idea much less tenable. Since then, the security sector has pushed the scientific community to take more extensive responsibility for research that could be used to develop, for example, biological weapons.

Do scientists have such a responsibility for how others might use their findings? If they do have responsibility, how is it most appropriately approached in practice? These questions are investigated by Frida Kuhlau at CRB in a dissertation that she defends on March 23:

Kuhlau argues that researchers do have a moral responsibility for research with dual use and she tries to specify the content of that responsibility. It includes, for example, always considering possible negative implications of one’s research; reporting activities of concern; being prepared to occasionally delimit the dissemination of results.

How is such responsibility best approached in practice? The traditional way of taking ethical responsibility for research is by imposing ethical regulatory systems (guidelines, codes, ethical review).

Like Linus Johnsson who defended his dissertation last Saturday, Frida Kuhlau doubts such bureaucratic attempts to ethically regulate research. Researchers need to shoulder the responsibility themselves, learning how to deliberate and take action concerning research with dual use.

Shouldering responsibility does not mean, however, doing it alone. Individual researchers normally don’t have all the competencies needed to reasonably assess possible risks of research. The scientific community and the security sector are dependent on each other. What is required to take proper responsibility, Frida Kuhlau suggests, is therefore an ethic of conversation and deliberation.

Taking moral responsibility for research with dual use presupposes ongoing communicational processes. These processes need organizational support, platforms. A novel suggestion in the dissertation is that ethical review boards could function as such platforms.

Rather than only reviewing, as ethical review boards normally do, these boards would support an ethical culture of conversation and deliberation about dual-use research.

For more information about this important dissertation, see News from Uppsala University. If you are in Sweden and want to visit the public examination, it takes place in Auditorium Minus, Museum Gustavianum, Uppsala, Saturday, March 23, 2013, at 09:15.

Pär Segerdahl

We recommend readings - the Ethics Blog

Dissertation on trust in biobank research

On Saturday, March 9, Linus Johnsson at CRB defends his dissertation:

The dissertation is based on four studies. The first two scrutinize empirical evidence concerning public trust in biobank research. They indicate that people do trust biobank researchers, at least in Sweden.

Such findings might give rise to complacency. The ethical regulatory system obviously works and promotes trust. Biobankers can relax.

The third study, however, is a conceptual investigation showing such a reaction to be mistaken. Trust creates obligations in the person who is being trusted. If a doctor collects samples from patients and suspects that their trust is mistaken in one way or another, the doctor has an obligation to handle that mistaken trust appropriately. (I’ve written about this study on The Ethics Blog.)

Public trust doesn’t merely indicate trustworthiness. It creates a moral demand. The proper response to public trust in biobank researchers, then, is taking increased moral responsibility.

The fourth study strives in the same direction. It critiques prevalent faith that trustworthiness is best quaranteed by an extensive ethical regulatory system (ethical review, guidelines, etc.). The opposite may very well be the case. Such a system may foster moral complacency and failure among researchers to deal with ethical issues that are not addressed by the system.

If I interpret Linus Johnsson right, the current widespread trust in ethical regulatory systems is mistaken, and his dissertation is an attempt to take responsibility for that mistaken trust by intellectually highlighting and critiquing it.

As this brief summary shows, the dissertation is original and presents some very thought-provoking results, empirically and above all conceptually. For more information about the dissertation, see News from Uppsala University.

If you are in Sweden and want to visit the public examination, it takes place in Auditorium Minus, Museum Gustavianum, Uppsala, Saturday, March 9, 2013, at 09:15.

Pär Segerdahl

We recommend readings - the Ethics Blog