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

Year: 2013 (Page 4 of 5)

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

Fruitful uncertainty

We tend to imagine the minds of great thinkers and scientists as fountains of knowledge, intelligence and certainty. That is what their brilliant works make us believe. The products are perfect; therefore, the minds that produced them must have been perfect.

Well, the opposite may also be true. Brilliant works can stem from an ability to endure ignorance, lack of clear-sightedness, and uncertainty – because such shortcomings motivate serious counter-attacks and hard work. Striving to overcome uncertainty and shortcomings can result in the most brilliant works.

These so-called “great minds” may have been people who loved their uncertainty because it alerted them to what requires more attention: “Here is a difficulty I must take more seriously!” But that is a moral quality rather than an intellectual one!  I just read some fascinating quotations from Linnaeus in Giorgio Agamben’s book, The Open, making me sense that moral quality in Linnaeus.

It must have been confusing for Linnaeus that he couldn’t find a given characteristic that clearly separates humans from apes. Still, he seemed to enjoy this uncertainty about our humanness and even teased those who couldn’t accept it by suggesting that the only difference he could find was a ridiculous dental detail without systematic significance:

  • “… just as the shoemaker sticks to his last, I must remain in my workshop and consider man and his body as a naturalist, who hardly knows a single distinguishing mark which separates man from the apes, save for the fact that the latter have an empty space between their canines and their other teeth.”

Linnaeus’ ability to stay with this uncertainty is further reflected in the name he gave our species: he didn’t add a given identifying characteristic to the generic name Homo.

I always believed that sapiens was meant as a given characteristic, just as Aristotle saw rationality as the distinguishing mark of the human. Agamben points out, however, that Linnaeus used the philosophical imperative nosce te ipsum, know yourself. The name Homo sapiens doesn’t appear until in the tenth edition of Systema naturae, and probably retains the sense of an imperative rather than a given characteristic.

In the absence of a given distinguishing mark, being human was for Linnaeus a task, Agamben suggests. The breathtaking name that Linnaeus originally gave our species, then, was:

  • Homo-know-yourself!

Only someone who is at home in uncertainty and is able to think in it would dare to “classify” our species as an imperative.

Although I’m sure that Descartes had the same moral character and derived nourishment from his own doubts, he was confident about what separates him as a human from the animals. He had mind, reason, while the animals were automata.

Linnaeus couldn’t share Descartes’ confidence and teasingly wrote:

  • “Surely, Descartes never saw an ape” (Cartesius certe non vidit simios.)

Don’t be ashamed of your uncertainty but value it as an asset!

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Ethical principles causing moral hallucinations

I want to continue the discussion in my previous blog post. It concerned an article raising the question whether researchers in genomics have a duty to actively look for incidental findings.

Joanna Forsberg aptly remarked that the notion of looking for findings that one isn’t looking for is strange. She also pointed out that healthcare doesn’t have a duty to look for incidental findings:

  • “In fact, in the context of healthcare incidental findings are (in general) deliberately avoided, by not doing tests when there is no clinical reason to do them. Is the duty of care more extensive in biobank research?”

This pertinent remark ought to worry ethicists. How can the ethical debate have reached a point where it is asked if researchers have duties to provide more healthcare than healthcare itself?

I couldn’t free myself from this problem that Joanna’s remark revealed.

I now believe it has do with the professionalization of ethics. It has become the ethicists’ professional duty to apply ethical principles to medical research. This works tolerably as long as it is possible to identify the traits that make the principles applicable. The application of the principle of beneficence, for example, presupposes that one can identify beneficial traits.

The reason why incidental findings in biobank research are debated so hotly, it seems to me, is precisely the difficulty of identifying traits in this complex terrain to which relevant ethical principles are applicable. Ethicists try hard to find aspects of genetic risk information and participation in biobank research that would make it possible to apply the principles of

  • respect for persons
  • beneficence
  • non-maleficence
  • reciprocity

so that the ethicists can fulfill their professional duty to guide biobankers by proposing an ethical policy for incidental findings.

The risk, however, when ethical principles are applied in desperation precisely because their application is unclear is that the principles begin to steer the description of reality… and to such an extent that they make us hallucinate moral duties.

I think that Joanna’s remark should act as a reminder of that risk.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

An obligation to look for incidental findings in genomics research?

A new article in The American Journal of Bioethics attempts to take the discussion about incidental findings in genomics research a step further by asking:

  • “Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings?”

The authors use an ancillary care model as a framework for their discussion. Ancillary care means care for research participants that is not required directly by sound science; not required to conduct a trial safely, for example, or to manage subject injury. The model was originally developed for research in developing countries.

The authors see ancillary care as the best perspective on incidental findings: a duty to disclose incidental findings is best justified as an ancillary-care obligation. The question in the article, then, is the following. If the ancillary care model implies a duty to disclose stumbled-upon incidental findings, does it imply also a duty to actively look for such findings?

To answer the question, three criteria are formulated all of which must be satisfied simultaneously to support a duty to look for incidental findings:

  1. Benefit: the genetic information sought must be beneficial for the patient.
  2. Uniqueness of access: researchers must be in a unique position to look for, assess and provide the genetic information.
  3. Burden: analyzing the genome for incidental findings must not take too much time, effort and resources from research.

Using these criteria, the authors conclude that currently there is no obligation to look for incidental findings in genomics research. Although uniqueness of access is high (genomic techniques are available primarily through research), benefit is low and burden high.

This may change in the future, the authors speculate, when better knowledge and technology make benefit high and burden low, and the technology still is available primarily through research. In such a scenario there would be an obligation to look for incidental findings. In the distant future, however, when genomic techniques are available also in clinical care, the obligation to look for incidental findings once again disappears.

In my view, this attempt to take the discussion a step further suffers from two major shortcomings that pertain already to the assumption that the ancillary care model could imply an obligation to disclose stumbled-upon incidental findings in genomics research.

Genomics research often is carried out as biobank research where the researcher’s relation to participants does not resemble a doctor-patient relationship. The researcher is not necessarily a physician and may work with samples collected years ago by others. The basic idea in the ancillary care model that “medical researchers must strike a balance between their obligations to medicine and those to research” is not obvious in many forms of large-scale biobank research.

Moreover, incidental findings in genomics research typically mean highly complex genetic risk information. It is not entirely clear, at least not to me, if the notion of, for example, actionability, has the same meaning for a discovered disease as for a discovered increased genetic disease risk.

An illuminating and realistic discussion about incidental findings in genomics research must, I believe, specifically address the biobank-infrastructural context of much genomics research, and the complex nature of genetic risk information.

If the ancillary care model generally is the best perspective on incidental findings, the applicability of this model to characteristic forms of genomics research would have deserved more careful attention.

Pär Segerdahl

We like real-life ethics : www.ethicsblog.crb.uu.se

Solidarity and biobanking

The concept of solidarity is currently receiving attention in bioethics and inspires new approaches to ethical problems.

The Nuffield Council on Bioethics recently published a report – Solidarity: reflections on an emerging concept in bioethics – initiating the development of a systematic solidarity framework for approaching difficult ethical questions in biobanking, biosecurity and health inequalities.

Concerning biobank participation, for example, one of the authors of the report makes this interesting statement:

  • “In the spirit of solidarity, we believe that it is acceptable to ask participants to agree to their sample being used in any future research that is within the broad aims of the biobank and has been approved by a research ethics committee. The risks to the participant are very low yet it would save valuable time and resources for the biobank.”

It is furthermore suggested that participation agreements should replace traditional consenting procedures. – I will study this suggestion and hope I can comment on it soon.

Continuing the work in the report, the Nuffield Council on Bioethics and the Brocher Foundation organize an international symposium:

The report and the symposium appear very interesting!

Pär Segerdahl

We recommend conferences - the ethics blog

What does it mean to simulate the human brain?

Earlier this week the exciting news was released that the Human Brain Project is one of the two Flagship Initiatives launched by the European Commission.

The project is an international collaboration between more than 80 research institutions. It will create computer models of the human brain to help us better understand the brain and its diseases. It is hoped that the project also will have practical applicability in the form of new computing and robotic technologies.

At CRB we are especially happy and proud that Kathinka Evers is on board as one of the Division Leaders of the Ethics and Society Division. She will investigate the philosophical implications of the project for our understanding of mind, identity and consciousness.

A main question for Kathinka is what simulating a brain means. The brain evolved in an environment and works embedded in social contexts. What does this imply for the attempt to simulate the brain? How does embodiment and social context enter the simulation of the brain?

The mapping of the human genome led to a deeper understanding of the significant role the environment plays in the functioning of our genes. Will the Human Brain Project result in similar emphasis on the environment with which the brain interacts?

The Ethics Blog will follow Kathinka’s work on this and other questions about the human brain with great interest.

(Here is an interview I made with Kathinka in June 2012.)

Pär Segerdahl

Part of international collaborations - the Ethics Blog

Athletes’ feeling that doping is okay is socially created

Doping is often discussed as the individual athlete’s own decision. The athlete wants to win and strategically chooses to take drugs to reach the goal.

When the cyclist Lance Armstrong recently confessed that he used performance enhancing drugs while he won Tour de France seven times, he personally took responsibility for his actions and presented doping as his own decision.

Simultaneously, he said in the interview with Oprah Winfrey that he didn’t feel like a cheater while he was using the drugs. Doping was experienced as part of the job. It didn’t feel wrong while it went on!

He suddenly spoke of doping not in terms of individuals making strategic choices, but as a doping culture to which he had belonged without reflecting or making conscious choices, and which he now wanted to change.

In a recent article in Sport, Ethics and Philosophy, Ashkan Atry investigates, with Mats G. Hansson and Ulrik Kihlbom, this easily neglected collective origin of individual athletes’ feelings of right and wrong.

Lance Armstrong confessed doping and took full responsibility for it as his own choice. It belongs to the dramaturgy of the responsible confession. But perhaps this dramaturgy presents doping in a misleadingly individualistic light?

Ashkan Atry thinks so. Doping is a culture, materially and emotionally. The phenomenon reaches beyond the individual athlete, and involves not only team-mates but also coaches, doctors, sponsors and fans (with their demands for superhuman performances).

The feeling that it is okay to dope is socially created. To successfully handle doping, we must avoid tempting individualistic perspectives and focus more on social processes and what Atry calls emotional cultures in sport.

I recommend the article as a refreshingly realistic approach to a phenomenon that otherwise easily evokes ineffective moralizing gestures.

Pär Segerdahl

We transgress disciplinary borders - the Ethics Blog

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