The Ethics Blog

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

Month: October 2013

Questionable questionnaires

30 October, 2013 / / 0 Comments

Questionnaires are increasingly frequent in bioethics. They can provide information about how ethical issues are real for the parties concerned: for patients, for families, for nurses, for physicians, for research participants, for donors…

Questionnaires can counteract professional isolationism where bioethicists believe they know exactly which issues should concern people, and on the basis of this “expertise” export ethical policies without importing impressions.

Unfortunately, isolationism isn’t that easily remedied. Kevin P. Weinfurt warns that questionnaires can conceal isolationism, if responses are interpreted by bioethicists who have other points of view and other linguistic habits than the respondents.

Interpretations are easily biased to speak to issues internal to the bioethical debate. You find Weinfurt’s warnings here:

How can ethicists’ points of view bias interpretations? By asking THEIR questions as if every human housed a bioethicist experiencing the same issues. Concerning clinical trials, for example, bioethicists estimate “chance of benefit from experimental therapy.” Thus, it is natural for them to query research participants how THEY consider their chance of benefit, as if participants too perceived the situation as a decision tree with chances of disease control and risks of death.

How can ethicists’ linguistic habits bias the answers? By being so thoroughly trained in a bookish scholarly culture that they interpret people literally. If a respondent answers the question,

  • “How confident are you that the experimental therapy will control your cancer?”

by encircling 80 %, they believe that the respondent DESCRIBES his private assessment of the probability. But communication does not consist only in describing inner mental states. People DO a great number of things with words, for example, they VOICE HOPE.

When a respondent who answered 80 % afterwards was interviewed about why other people would answer 10 %, he didn’t answer in terms of divergent prognostic factors, but said:

  • “Oh, man, I feel sorry for them… They’re just not…they’re just…they’re hopeless. They have no hope left. For some reason, they’ve been beat down so bad that they can’t think positive anymore… Maybe they don’t have the same kind of support in their life that I do.”

If Weinfurt’s warnings are right, assuming that patients’ hope of recovery causes unrealistic assessments of chance of benefit may be a misconception. Patients may not make such assessments at all. It is the questionnaire that causes the illusion.

They voice their hope, that’s all.

Pär Segerdahl

In dialogue with patients

Share this post

What does responsibility mean within a widespread doping culture?

23 October, 2013 / / 0 Comments

We tend to hold individual athletes responsible for doping behavior. This makes it tempting to assume that if we are to fight doping in sports, we need to more efficiently identify these individuals and impose sanctions on them.

But what if doping is a phenomenon with many ramifications? What if doping isn’t invented by individual athletes, but is a social reality where practices and attitudes are formed also by (and with) other actors, such as leaders, trainers, doctors, sponsors… and through the unreasonable expectations of the audience?

Ashkan Atry recently defended a thesis focusing on the social and cultural dimensions of doping. You find his thesis here:

Without denying that individual athletes have responsibility or that sanctions are needed, Atry questions whether it is responsible to primarily hold individual athletes responsible for doping behavior. He argues that we won’t change the current doping culture if we don’t broaden the scope of responsibility to include also individuals and groups other than the athletes themselves.

The thesis develops a broader and more prospective notion of responsibility, to allow us to identify responsibility more responsibly than we far too easily are tempted to do.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Share this post

Overview of the regulatory framework of European biobanking

16 October, 2013 / / 0 Comments

Unless you have an education in law, it is almost impossible to find your way through the regulatory landscape of European biobanking, or to understand the motives behind the proposed new general data protection regulation.

However, a helpful overview and discussion can be found in this article by Evert-Ben van Veen:

The article also contains some interesting thinking on a number of important issues, like the concept of personal data, the need for a third category of data between personal data and anonymous data, and the role of trust in institutions.

Pär Segerdahl

We recommend readings - the Ethics Blog

Share this post

Idling biobank policy?

9 October, 2013 / / 0 Comments

If you allow researchers to do brain imaging on you for some research purpose, and they incidentally discover a tumor, or a blood vessel with thin walls, you probably want them to inform you about this finding. There are no doubts about the finding; the risks are well-known; it is actionable.

Suppose instead that you donate a blood sample to a biobank. Suppose that researchers studying the sample discover a genetic variant that, depending on a number of interacting factors, might result in disease in three years’ time, or in thirty years, or not at all. It is difficult to predict! Do you still want to know?

How should these incidental findings be handled that increasingly often will be made in genetic biobank research? We are all different, so finding variants with some statistical relation to disease is more or less expected.

A common approach to this question within attempts to develop a policy for incidental biobank findings is to formulate general conditions for when researchers should inform participants. Like: if the finding is analytically valid; if it has clinical significance; if it is actionable – then participants should be informed.

The problem is: we already knew that. We know what these conditions mean in imaging studies when a tumor or a damaged blood vessel is discovered. In these cases, the conditions can be assessed and they make it reasonable to inform. But what about genetic risk information, which often is more multidimensional and has unclear predictive value?

This question is discussed in a recent article in the European Journal of Human Genetics, written by Jennifer Viberg together with Mats G. Hansson, Sophie Langenskiöld, and me:

Viberg argues when we enter this new and more complex domain, we cannot rely on analogies to what is already known in a simpler domain. Nor can we rely on surveys of participants’ preferences, if these surveys employ the same analogies and describe the findings in terms of the same general conditions.

Time is not yet ripe for a policy for incidental genetic findings, Viberg and colleagues conclude. Formulating a policy through analogies to what is already known is to cover up what we do not know. The issue requires a different form of elucidation.

That form of elucidation remains to be developed.

Pär Segerdahl

We participate in debates - the Ethics Blog

Share this post

Dynamic consent in biobank research: better than broad consent?

2 October, 2013 / / 0 Comments

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 me without keys. I consent to a specific biobank framework.

Thereafter, the research is done on the sample and data in registers. What an easy way of contributing to research!

Too easy, it is sometimes objected. Broad consent to future research implies ethically problematic passivity among biobank participants, the objection goes. Participants are precluded from exercising fundamental rights and freedoms. Power is transferred from participants to researchers.

What’s the solution, then? An often proposed solution is familiar to all who make choices on the internet. Passive biobank participants can be activated by keeping themselves updated via a website. On this website, they give dynamic consent in real time, as researchers continually inform about proposed research with donated samples.

Dynamic consent would empower biobank participants, make them engaged in the decision-making process and equal partners in the research.

It sounds brilliant! What an easy solution!  In the case of large population-based biobanks, however, it would mean that hundreds of thousands would spend the rest of their lives keeping themselves updated about planned research with samples donated perhaps decades ago, and for each new project make active choices: yes or no?

Researchers would be free to come and leave the biobank, while participants are fettered to a life-long commission as ethical gate-keepers, with their own login information.

Seduced by sugary phrases? In an article last month – Broad versus dynamic consent in biobank research – Norwegian research ethicists identify six often cited reasons in favor of a dynamic consent model for biobanks. For each cited claim, they are able to adduce reminders and considerations that make the claim notably less appetizing, at least to me.

This post would become long-winded if I informed about all objections to the claims in favor of dynamic consent: who reads long texts on the internet? Two central objections, however, are that a dynamic consent model would invite people into the therapeutic misconception and that it would individualize the ethical review of public health research.

Still, it is vital that biobanks continually inform about ongoing and planned biobank activities, making the research transparent, and giving those who might want to opt-out opportunity to do so.

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Share this post