The Ethics Blog

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

Author: Pär Segerdahl (Page 35 of 44)

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

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

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

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

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

Making the Helsinki Declaration coherent?

25 September, 2013 / / 0 Comments

The Helsinki Declaration is under revision. One suggested change concerns a paragraph about biobank and register-based research, which states:

  • “For medical research using identifiable human material or data, physicians must normally seek consent for the collection, analysis, storage and/or reuse.”

The paragraph currently continues with the following exceptions:

  • “There may be situations where consent would be impossible or impractical to obtain for such research or would pose a threat to the validity of the research. In such situations the research may be done only after consideration and approval of a research ethics committee.” (My emphasis.)

The proposed revision is to delete the exception I emphasized. – Why? I speculate that the deletion is proposed to avoid perceived conflict with an earlier paragraph, stating that

  • “the well-being of the individual research participant must take precedence over all other interests.”

In particular, the interests of research must not take precedence over the interests of the participant. But it might appear as if “…or would pose a threat to the validity of the research” does just that. The phrase seems to emphasize the interests of research.

In the latest issue of Science, CRB researchers Joanna Forsberg and Yusuke Inoue question the proposal to delete the exception. In a letter, “Beware Side Effects of Research Ethics Revision,” they point out that in biobank and register-based research, risks of participation are only minimal.

Human beings are “participants” in a markedly different sense when the research is done on their data or samples, rather than on themselves or their bodies.

The authors argue that “when the risks are minimal, it is not clear that the individual’s interests in having a say should automatically outweigh the good that can result from robust research.”

I think their views should be taken seriously. There is a risk that the effort to achieve verbal consistency neglects actual distinctions between forms of medical research. If the paragraphs that seem to conflict concern markedly different forms of research and markedly different forms of participation with markedly different risks – then an important exception might be sacrificed for the sake of an only apparent conflict.

Pär Segerdahl

We participate in debates - the Ethics Blog

Human existence and biological life: what is most fundamental?

18 September, 2013 / / 0 Comments

My post last week tried to highlight a tension between human existence and biological life, using Henrietta Lacks as an example. She was a unique human being, existing in a human world; but the HeLa cells obtained from her cancer tumor function in laboratories all over the world as “bio-objects” representing biological life more generally.

This tension between a human world and a laboratory world, between human existence and biological life, could be questioned (as in a comment to the Swedish version of the post): There is no tension, for humans owe their “existence” to the biological processes of life. If cells didn’t organize human brains, there simply would be no “human existence.”

Biological life is fundamental: human existence should bow and scrape to its biological origins.

The tension could be questioned also from a humanistic perspective, however. On this view, the biological perspective is formed by humans. Human existence is the unnoticed condition for the biological notion of life. Once again there is no tension, for the biological notions of “cells” and “brains” owe whatever meaning and function they have to human existence.

Human existence is fundamental: the biological perspective should bow and scrape to its human origins.

Both attempts to reject the tension by determining who should bow humbly backfire. The tension is rejected by each party, but in opposed ways, making the tension surface instead as total intellectual war.

So let’s face the tension instead, and perhaps that’s what the article mentioned last week tried to do.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Being human; representing life

10 September, 2013 / / 0 Comments

A new article reconsiders Henrietta Lacks and the immortal HeLa cells that were obtained from her rare cancer tumor in the 1950s; cells that still replicate and are used in biomedical laboratories all over the world:

The article is written by Anna Lydia Svalastog and Lucia Martinelli, both members of the Culture, Health and Bioethics network at CRB.

There is a lot going on in the article, making it difficult to summarize. As I understand it, though, the article focuses on two fields of tension when biological samples from humans are used in biomedical research – tensions between:

  1. being human; and representing biological life,
  2. the value of the one; and the value of the many.

Both fields of tension intersect in the case of Henrietta Lacks:

  1. Henrietta Lacks was a human being, existing in a human world; but HeLa cells function as “bio-objects” representing biological life.
  2. Henrietta Lacks was one unique individual; but HeLa cells have come to represent humanity.

These tensions highlight the interchange between research and society. We exist as human beings; but by donating samples to research, we also contribute to representing biological life. We are unique individuals; but through our samples, we also contribute to representing what is general.

The authors cite the European biobank infrastructure, BBMRI, as an approach to governance and ownership of knowledge and property that begins to address these tensions in interesting, new ways. The article also speaks in favour of interdisciplinary collaboration between the life sciences, the social sciences, and the humanities, to understand the fields of tension that arise when individual human beings contribute to medical research.

Pär Segerdahl

Part of international collaborations - the Ethics Blog

The diversified uses of biological samples

28 August, 2013 / / 0 Comments

As a reminder of how diversified the collection and use of biological samples is, I recommend a paper by Takako Tsujimura-Ito, Yusuke Inoue (currently a guest researcher at CRB), and Ken-ichi Yoshida:

Departments of forensic medicine obtain samples from autopsies in order to secure evidence that can be used in court. These samples, often whole organs, typically need to be stored for long periods, since cases sometimes require re-examination of the evidence. The samples are stored also for secondary use in research advancing both clinical and forensic medicine.

The problem addressed in the paper concerns the communication with bereaved families. Families are often not contacted by the forensic departments in Japan, since such contacts can be seen to threaten the neutrality of the evaluation of the evidence.

Emphasizing that stored samples from autopsies benefit bereaved families, patients and society as a whole, the paper recommends more effective ways of communicating with families, to avoid damage to public confidence when families inadvertently get to know that samples from deceased family members are stored or used in research.

Pär Segerdahl

We recommend readings - the Ethics Blog

Save humanity from the human

22 August, 2013 / / 0 Comments

We must enhance the human; or else humanity will come to an end. Thus dramatically one could summarize the bioethicist Julian Savulescu’s TEDx-talk in Barcelona in July.

The talk lasts fifteen minutes; you can watch and listen to it yourself: The Need for Moral Enhancement.

The idea is that we urgently need medicine and technology to enhance our moral skills; otherwise we will not be able to handle the global threats that we ourselves created: climate change, nuclear weapons, terrorism, starvation, escalating violence.

Globalization, in short, created a world with dimensions to which our hunter-gatherer morality isn’t adapted. Only a moral pill can save us now.

Listening to the talk, I’m struck by how archaic it sounds, despite references to modern medicine and technology. Thus fire-and-brimstone preachers always made people feel the proximity of the end of the world. Thus fire-and-brimstone preachers always made people feel that the cause of the despicable state of the world is their own moral failure. Thus preachers always forced a new awakening:

  • “You’re on the wrong path; I can show you the way!”

The difference is the use of what could be termed the modern rhetoric of empirical justification, in which all claims must be supported by evidence… that is to say, by PowerPoint slides. The rhetoric seems to direct the use of evidence, however, for evidence pointing in undesired directions isn’t cited.

Neither does Savulescu explore alternative ways of thinking. Has globalization really produced a world so big that we cannot handle it? Couldn’t one just as well claim that globalization created a world so miserably tiny and manageable that one might grieve for the death of all that is great?

In the talk, the most archaic form of moralizing is provided with a modernized rhetorical façade, in order to persuade us that only conversion to a biomedically perfected morality can save us now. It is slightly paradoxical.

No wonder the audience looks dejected.

Pär Segerdahl

The temptation of rhetoric - the ethics blog

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