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

Author: Pär Segerdahl (Page 26 of 43)

Macchiarini and the spirit of fraudulence

Pär SegerdahlI assume you heard of Paolo Macchiarini, the “star surgeon” who, with the willpower of a general, simply would win a great battle at the frontline of research – by creating new tracheae using the patients’ own stem cells. That the endeavor had costs in terms of a few soldiers’ or patients’ lives is sad, but some losses must be accepted if one is to win a major battle in the service of cutting-edge experimental research.

It is difficult to avoid such an interpretation of Macchiarini’s mindset, after seeing the Swedish TV-documentaries about him (“Experimenten”/”The Experiments”). You feel the presence of a dominating iron will to carry out a plan and to win. It feeds a warlike spirit in which collegial doubts must be suppressed because they corrupt the morale and slow down the march forward, toward the frontline.

Truth is, as we know, the first casualty of war. Losses must be described as successes, in order not to lose readiness for action in the final battle – which, of course, will be won, don’t for a moment doubt that! The condition of patients who after surgery barely can breathe must thus be described as if the surgery had given them a nearly normal respiratory function. Macchiarini’s misconduct follows the logic of war.

Imagine this rigid winner, waiting impatiently for patients for whom his unproven methods (with some good will) could be interpreted as a last chance to survive. Does he approach the patients as a doctor who wants to offer a last treatment option? Hardly, but the possibility of interpreting the situation in such a way takes him to the frontline: he gets the opportunity to operate on them.

Does he then relate to the patients as a researcher to his participants? Not that either. For the treatment is only improvised in the heat of battle and can hardly even be called experimental; and all failures will be covered up by more scientific fraudulence.

The fact that research ethics developed in the shadow of the Second World War is hardly a coincidence. Something that worries in the Macchiarini case is that research itself – with its competition for funding and more – obviously can be animated by a warlike and strategic spirit of winning, which corrupts individuals as well as institutions…

It goes without saying that suspected research misconduct should not be investigated by the universities themselves; that there is a need for an independent body that handles such matters.

Pär Segerdahl

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Tired of the human?

Pär SegerdahlI have on several occasions encountered what could be called: impatience with the human. Haven’t we been humans long enough? Is it not high time that we stopped to perceive the world from our parochial human perspectives, where the sun “rises” every morning and warms us – as if it cared about us!

We speak of beneficial bacteria in the intestinal flora, as if they took care of us as our inner servants. But what do they care about us? We are grossly anthropocentric. It is time to leave this human idyll and become… posthuman. – At least in serious, intellectual contexts.

The parochial illusion in which we supposedly live is often associated with language. Millennia of human endeavor have been deposited in linguistic structures that constantly repeat the same old spectacle in front of our eyes: the world as seen from a human point of view.

The time is ripe for a revolt against our homespun linguistic tradition; for the construction of new materialistic language, free of inherited folk perspectives on a fundamentally indifferent universe, and on us. – At least in serious, intellectual contexts.

The only problem is that even language, if we are to be consistent, must be a piece of folklore. Entities like language, words, statements, and meanings obviously belong to – if we are to be completely consistent – an oral tradition where we, for utterly mundane purposes, talk about “language,” “words,” “statements,” and “meanings.”

It suddenly seems unexpectedly difficult to go beyond the human. There is no language to rebel against. Or the illusion is too powerful: we cannot even speak of resisting it without relying on it. For the very idea of a ​​revolt, the exciting feeling of being near the truth or on its track… is this not all too familiar, all too human? Even more folklore, then?

Perhaps we should rather be impatient with this metaphysical intellectualism, which not very clear-sightedly – it seems – dreams of beholding an absolutely pure reality.

We continue to be humans who sometimes, for various purposes, describe a material reality and take it into account. – Even in serious, intellectual contexts.

Pär Segerdahl

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Online course in research ethics, spring 2016

Pär SegerdahlAnyone 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 governing data management or research on humans and animals?

If you want to learn more about these issues, or perhaps about publication ethics and authorship rules, conflicts of interest, mentor/trainee responsibilities, biosecurity and more – then we can help you. We give an online course in research ethics for medicine and the life sciences.

The course runs for ten weeks, from April 4 to June 10, every week with its own theme (the last week is devoted to sharing what you learned with your home institution). The course includes video lectures and texts to read, but also interactive exercises and regular e-meetings with other students and with the teacher.

The course is given in English and is open to students from all over the world. If you want to know what some of the former students have to say about the course, you can read more here. And if you want to know who the course is aimed at, read more here.

Research ethical responsibility is vital and it is important that ethics education reaches out. The course fee is € 1.125 (including tax), and to students who cannot receive financial support from their home institution we offer a limited number of scholarships for which application deadline is February 15.

If you don’t need a scholarship you can apply for the course until course start.

Pär Segerdahl

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How are ethical policies justified?

Pär SegerdahlEthical policies for practices such as abortion and embryonic stem cell research should, of course, be well justified. But how does one justify that activities involving the destruction or killing of human embryos and fetuses should be allowed? How does one justify that they should be banned?

Just because the issues are so sensitive and important, they awaken a desire to find the absolutely conclusive justification.

The questions arouse our metaphysical aspirations. Ethicists who discuss them can sometimes sound like the metaphysicians of the seventeenth century who claimed they had conclusive arguments that the soul affects the body, or that it absolutely cannot affect it; who thought they could prove that God is the soul of the world, or that such a view detracts from God’s perfection.

Since both parties claim they have absolutely conclusive proofs, it becomes impossible to exhibit even the smallest trace of uncertainty. Each objection is taken as a challenge to prove the superiority of one’s own proofs, which is why metaphysical debates often resemble meetings between two hyper-sensitive querulants.

This is how I perceive many of the arguments about the embryo’s “moral status,” which are believed to provide conclusive evidence for or against moral positions on abortion and embryonic research – based on the nature of things (i.e., of the embryo).

Others, who want to reason more rigorously before drawing conclusions, instead scrutinize the arguments to demonstrate that we haven’t yet found the metaphysical basis for a policy (you can find an example here). From metaphysical dogmatism to metaphysical pedantry.

The metaphysical vision of an absolute path through life does not seem to give us any walkable path at all. It does not even allow meaningful conversations about what we find sensitive and important. But isn’t that where we need to begin when we look for a justification?

Pär Segerdahl

This post in Swedish

We think about bioethics : www.ethicsblog.crb.uu.se

 

Gene editing: a threat to the moral ecosystem?

Pär SegerdahlA few years ago it was discovered that bacteria can protect themselves against viruses by cutting the viruses’ DNA at specific positions. The discovery is the basis for new, easier and more precise ways to make changes in the genome. Researchers have begun to talk about “cutting and pasting” in the genome; about “editing” the genome.

The new gene-editing technique has been applied to plant breeding. But it can, of course, be applied elsewhere too. And as often is the case, the issues appear extra controversial when applications to humans are considered.

I read an intellectual debate between a proponent of therapeutic use of the technique on humans (Julian Savulescu), and an opponent (Margaret Somerville). (You find it here.) The opponent used an analogy to summarize her position, which I cannot resist commenting upon here on the Ethics Blog. Here is the analogy (as I render it):

  • Today we are acutely aware that we must take responsibility for our environment, for the physical ecosystem. But the same can be said of our metaphysical or moral ecosystem. We must care about our values, beliefs, attitudes, principles and narratives. Genetically editing a human embryo, perhaps to remove a disease gene, may have good consequences from an individual perspective. But it threatens the moral ecosystem at its roots: it contradicts the respect for human life.

Say what you want, but it is a dramatic analogy! Maybe a little too dramatic. For essentially the same threat has been depicted many times before, when new forms of biotechnology appeared on the horizon. If this kind of threat was real, morality should lie in ruins since long ago. But we quickly forget and it is always only the latest techniques that Threaten Morality at its Foundation.

I believe that the idea of ​​a major technological threat to morality is based on intellectualizing both technology and morality. One attaches enormous significance to the fact that aspects of the technology can be described with certain words, such as “editing” or “designing.” The description, ​​”designing a child,” sounds like it logically clashed with another intellectualization – of morality as a system of propositions about what a “person” is, about what “respect” is, and about what is “right and wrong.”

The idea of an apocalyptic threat is thus based on reading the new technique and morality literally, so that it sounds as if the technique contradicted the basic tenets of morality.

Is there nothing to worry about, then? Should we not care about important values? Of course we should. My point is that in practice this looks differently than it verbally sounds like.

When new biotechnologies are implemented in society and put to use, this occurs in specific practical contexts where there are recognized problems that one wants to solve or treat. These applications are regulated, ethically and legally.

In vitro fertilization (IVF), another technique, is embedded in its specific contexts. Within these contexts, the technique solves problems for people. But it hardly threatens morality by, on some general and verbal level, contradicting the basic tenets of a moral system – such as “the respect for human life.” Rather, the technology has become a new way to concretely respect people and take their problems seriously.

The practical aspects disappear in the intellectualization of the issues, with its focus on words and theses. But it is the living contexts we have to take responsibility for. That is where we find the respect and the disrespect. That is where the problem lies.

Some moral problems are just false readings, overinterpretations of words.

Pär Segerdahl

This post in Swedish

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

Fourth issue of our newsletter about biobanks

Now you can read the fourth newsletter this year from CRB and BBMRI.se about ethical and legal issues in biobanking:

The newsletter contains three news items:

  1. Moa Kindström Dahlin describes the work on ethical and legal issues in the European platform for biobanking, BBMRI-ERIC, and reflects on what law is.
  2. Josepine Fernow features two PhD projects on research participants’ and patients’ preferences and perceptions of risk information.
  3. Anna-Sara Lind discusses the ruling of the European Court of Justice against the Safe Harbour agreement with the United States.

(Link to PDF version of the newsletter)

And finally, a link to the December issue of the newsletter from BBMRI.se:

Merry Christmas and a Happy New Year!

Pär Segerdahl

We recommend readings - the Ethics Blog

Ethical questions raised by experiencing another culture (By Amal Matar)

Amal MatarWhen I first moved to Sweden, I was pretty excited to explore a new country and experience Swedish culture and life. In many ways I had not expected the extent of the difference between what I was familiar with and Swedish culture. I assumed, naively, that I would be in a familiar setting because I had been to other countries. One of my preconceptions was seeing all Western countries as similar, another was believing that European countries shared the same values and culture. But I was proven wrong.

Being brought up in Cairo, Egypt, I was raised in a comparatively restrictive patriarchal family-oriented environment where gender roles are very specific. Although this is by no means uniform and there are exceptions to the rule as well as big variation among Egyptian urban and rural contexts, the overarching tendencies in terms of law and societal expectations are quite gender specific. For example, modesty is expected from women at all times in terms of dress and behavior, even when they are ill or seeking reproductive health advice.

Another dominant aspect is hierarchy. It exists not only in the academia and other working environments but also at family levels and even between spouses and between siblings. The older expect respect and obedience and should not be challenged even politely.

In contrast, Swedish culture is based on gender equality, where paternal leave is encouraged, and women’s representation is sometimes ensured by affirmative action. In addition, personal autonomy is embedded in the culture and laws are set to emphasize autonomy particularly in healthcare contexts. Hierarchy is not prominent and obedience is not expected. Respect and politeness are appropriate for all ages.

Navigating the healthcare system was a challenge I faced. It is quite structured and systematic, which in a way ensured efficiency, but this was novel to me. In addition, I had difficulty explaining my symptoms to my GP because of language barriers. She spoke neither English nor Arabic. Later, this was resolved because I was transferred to another GP who spoke English fluently.

This made me ponder on the challenges immigrants and refugees coming from the Middle East encounter upon arrival and the conflict they feel between their value system and the Swedish one. Might this be the reason why migrant women use less healthcare services compared to their counterpart? How culturally sensitive does Swedish healthcare need to be to accommodate the growing numbers of refugees? And would healthcare professionals, in order to be culturally sensitive, be expected to rethink and readdress their cultural norms? Is there a line to be drawn between being culturally sensitive and advocating beneficence? Are these two values (cultural sensitivity and beneficence) culturally relative? Which values should take the upper hand?

These are questions that my experience of moving to Sweden raised. I’m not sure how to answer them but I tend to think that there are possibly two scenarios that can ensue. Either the encounter of these two value systems can, over the long run, evolve into a third one. Or each party accepts their counterpart’s value system even when they don’t fully approve.

You can read more about my pondering in a more specific bioethical field, namely, reproductive ethics, by following this link.

Amal Matar

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

 

Why are bioethicists conducting empirical studies?

Pär SegerdahlBioethicists often make empirical studies of how the public, or relevant groups, perceive organ donation, euthanasia, or research participation; or how they perceive research that can be considered controversial, like embryonic stem cell research.

An objection to empirical bioethics sometimes made is that empirical evidence cannot settle ethical issues. Suppose a survey shows strong support for euthanasia among the public. Does that make euthanasia right?

No, it would be a joke to reason as if a survey gave evidence that euthanasia probably is right (but more studies are needed before we can be sure). Ethical issues are determined neither by vote nor by questionnaires or focus-group interviews.

So why are such studies conducted? How can empirical data serve as a basis for ethical reasoning? Have bioethicists begun to make the mistake of drawing conclusions from what is the case to what should be the case?

These questions appear fundamental. Are empirical methods legitimately used in ethics?

I think that examples of good uses can be given. A questionnaire or interview study with medical staff can exhibit ethical problems in health care practices that otherwise would have been unnoticed (like Mona Pettersson’s study of nurses’ experiences of do not to resuscitate orders). Empirical studies can also show how more values are ​​at stake than those traditionally taken into account in bioethics. Many examples could be given, but let me instead use an analogy:

Suppose someone asks you for advice on a delicate matter. Will you not ask questions to that person, to better understand the context; what is at stake; what the actual problem is? Simplified, one could say that this is what empirical bioethics does. It is not about obtaining empirical evidence of what is right and wrong. It is about getting a better grasp of the problem: what is at stake, what it is about.

The words “empirical,” “facts” and “evidence” are often used rhetorically in debates: to support views and positions. Probably it is such intellectual debate rhetoric one thinks of when empirical bioethics is questioned. Bioethicists are seen as shrewd debaters who try to conjure forth empirical support for ideas of right and wrong. But empirical work is not primarily about answering questions, but about asking questions (as in the analogy).

Empirical bioethics deepens the question, rather than seeks artful shortcuts to the answer. The deepening of the question gives friction to move forward through the real problem. We must not be fooled by the intellectual rhetoric of empirical justification when bioethicists make empirical studies to reason more sensitively about the actual problem.

Pär Segerdahl

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ethics needs empirical input - the ethics blog

Ethics in the midst of life

Pär Segerdahl“You don’t treat another human like that!” Thus we may speak, with a trembling voice that simultaneously reveals our confidence. Perhaps to a person who harasses someone else. You just don’t treat people like that!

But what gives us the right to object? From where does our confidence come? Must it not be from the concept of the human? Perhaps we should bracket our passionate voice and instead soberly examine the concept “human being”: so that we may purely intellectually understand why it is wrong to harass people. Perhaps our conceptual investigation reveals some sort of inviolable dignity in human essence. The rest follows from the pure laws of thought.

I believe Socrates did something similar. He shook Athenians’ confidence in life through conceptual investigations that he indicated would lead them to the ultimate source of true confidence; to knowledge of the pure ideas of what is good and right. The Athenians’ mistake was that of simply being confident in life; as humans are confident. That confidence in life made them blind to the purer and more fundamental knowledge that can be reached by turning the gaze toward the concepts themselves.

These tendencies to purify what is intellectually binding in morality make me think of inventors of perpetual motion machines. They dream of machines that, through their ingenuity, can do what no ordinary machine can do. They just move and move, all by themselves, without any connections with the energy flows of nature and life. For they are so cleverly made immune to friction and objections.

The problem is that the purity of these unobjectionable constructions is achieved at the cost of no longer speaking to people; only to other dreamy seekers of perpetual motion machines.

The trembling voice characterizes ethics. Our confidence in life has no ingenious source in reason itself, which we should seek instead of being confident. This does not prevent us from reflecting on our ethical responses and develop our way of living and thinking, allowing our trembling voice to deepen as we seek our way through life.

Ethics is in the midst of life. A moral perpetual motion machine outside of any such living context cannot be constructed. There are limits to how reasonable one can be.

Pär Segerdahl

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The Ebola epidemic also created an epidemic of rumors

Pär SegerdahlThe outbreak of Ebola virus disease in West Africa in 2014 was fought with scientific, medical knowledge about the virus. But for that knowledge to be translated into practice, good communication with the people in the affected areas was needed.

Joachim Allgaier and Anna Lydia Svalastog describe how communication was hampered by the fact that the epidemic also created an epidemic of rumors about the disease, which internet and mobile communication quickly spread in the affected areas and other parts of the world. The Ebola epidemic was at least two epidemics:

Unscientific ideas about the causes of the disease or about remedies (like eating raw onions, drinking salt water) spread online. But also conspiracy theories about the international efforts spread, which sometimes led to locals hiding their sick or preventing the work of humanitarian organizations.

The article also includes examples of successful treatments of the communicational epidemic. Local anthropologists found, for example, that the name “isolation centers” was interpreted by the locals as “death chambers,” and suggested that one should instead speak of “treatment centers.” Anthropologists could also, by contacting respected members of local communities, help changing burial rituals and other customs that contributed to the spread of the Ebola virus.

The article furthermore gives examples of how online social networks and YouTube, which contributed to the spread of rumors, also were used by the local populations to inform each other about how to wash  hands and behave to actually reduce the spread of the disease.

The conclusion of the article is that even if scientific and medical tools are absolutely central to combating virus epidemics, we must in order to succeed also treat the secondary, virtual epidemics that quickly spread through click-friendly news links and social networks online. All this requires sensitivity to local contexts.

Both kinds of epidemics must be treated simultaneously.

Pär Segerdahl

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