More biobank perspectives

September 27, 2016

If you did not get your fill during the Europe biobank week in Vienna, we give you more biobank related news in the latest issue of Biobank Perspectives, our newsletter on current issues in biobank ethics and law.

This time, Moa Kindström Dahlin describes what BBMRI-ERIC’s new federated Helpdesk for ELSI-issues can offer. We also invite you discuss public-private partnerships in research at a workshop in Uppsala on 7-8 November.

The legislative process on data protection in the EU might be over for now but there is still activity in government offices. Anna-Sara Lind gives you her view on the consequences for Sweden. We are also happy to announce that the guidelines for informed consent in collaborative rare disease research have received the IRDiRC Recognized Resources label.

You can read the newsletter on our website, or download a pdf version.

Josepine Fernow & Anna-Sara Lind

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We recommend readings - the Ethics Blog

Physicians’ experiences of do-not-resuscitate orders

September 21, 2016

Pär SegerdahlCritically ill patients sometimes have such a poor prognosis that cardiopulmonary resuscitation for cardiac arrest (CPR) would not help. They are so weak that they would not survive the treatment. If they survive, they do so with even poorer quality of life. The physician can then write a so-called DNR decision, which means that CPR should not be performed.

Mona Pettersson, PhD student at CRB, writes her thesis on these decisions. I have previously written about her first study, in which she interviewed nurses about their experiences of DNR decisions at Swedish hematology and oncology departments.

This summer the Journal of Palliative Care and Medicine published the second study, in which physicians were interviewed about their experiences of these decisions.

In the interview material, Mona Pettersson discerns three roles that physicians perceive they have. They act as decision maker, as patient advocate and mediator for relatives, and as team member. Physicians describe their experiences of these roles, such as the importance of making clear to relatives that it is the physician who makes the decision – so that relatives don’t risk feeling guilty.

The interviews with physicians also contain descriptions of ethical difficulties associated with DNR decisions. Although the physicians emphasize that the decision is made on medical grounds, they also describe ethical challenges and trade-offs. The decisions seem to be especially difficult in hematology wards, where patients can get intensive treatment for a long time, and where even the treatment makes them ill, but almost up to the last moment can be regarded as treatable. Here decisions are made quickly and at a late stage. Physicians’ experiences of the decision not to resuscitate vary from experiencing that they make themselves God, to experiencing it as just one medical decision among others.

In her conclusion, Mona Pettersson emphasizes that the results indicate how DNR decisions are made not only on medical grounds (such as prognosis and prospect of surviving cardiopulmonary resuscitation). They are made also with reference also to ethical values such as autonomy and quality of life after resuscitation.

In her future research, Mona Petterson will examine the ethical skills needed in DNR decisions and how they can be learned and developed.

Pär Segerdahl

Pettersson, M. Hedström, M. and Höglund, A. Physicians’ experiences of do-not-resuscitate (DNR) orders in hematology and oncology care – a qualitative study. Journal of Palliative Care and Medicine. 2016. DOI: 10.4172 / 2165-7386.1000275

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We have a clinical perspective :

We look for a PhD student

August 30, 2016

Pär SegerdahlAt CRB we seek new ways to study how people respond to health information, especially risk information, and how they make trade-offs between risks and benefits. We are right now looking for a PhD student who can work in one of these projects. The task involves both qualitative and quantitative work, including so-called Discrete Choice Experiments.

CRB is an international research environment and the working language is English. However, for this position the applicant must be proficient in Swedish, to be able to carry out the qualitative work.

If you know a Swedish speaking person who might be interested, please inform him or her about the advertised position. The Swedish version of this post contains links to information about the position.

Deadline for applications is 12 September.

Pär Segerdahl

We like real-life ethics :

Identifying individuals while protecting privacy

August 24, 2016

Pär SegerdahlResearch ethics is complex and requires considering issues from several perspectives simultaneously. I’ve written about the temptation to reduce research ethics to pure protection ethics. Then not as much needs to be kept in mind. Protection is the sole aim, and thinking begins to resemble the plot of an adventure film where the hero finally sets the hostages free.

Protection is of course central to research ethics and there are cases where one is tempted to say that research participants are taken hostage by unscrupulous scientists. Like when a group of African-American men with syphilis were recruited to a research study, but weren’t treated because the researchers wanted to study the natural course of the disease.

Everyday life is not one big hostage drama, however, which immediately makes the issues more complex. The researcher is typically not the villain, the participant is not the victim, and the ethicist is not the hero who saves the victim from the villain. What is research ethics in everyday situations?

There is currently a growing concern that coding of personal data and biospecimens doesn’t sufficiently protect research participants from privacy invasions. Hackers hired to test the security of research databases have in some cases been able to identify the individuals who provided their personal data to research (in the belief that the link to them had been made inaccessible to outsiders through advanced coding procedures). Such re-identified information can obviously harm participants, if it falls into the wrong hands.

What is the task of research ethics here? Suddenly we can begin to discern the outlines of a drama in which the participant risks becoming the victim, the researcher risks becoming the villain’s accomplice, and the ethicist rushes onto the scene and rescues the victim by making personal data in research databases completely anonymous, impossible to identify even for researchers.

But everyday life hasn’t collapsed yet. Perhaps we should keep a cool head and ask: Why are personal data and biological samples not fully anonymized, but coded so that researchers can identify individual patients/research participants? The answer is that it’s necessary to achieve scientific results (and to provide individual patients the right care). Discovering relationships between genetics, lifestyle and disease requires running several registries together. Genetic data from the biobank may need to be linked to patient records in healthcare. The link is the individual, who therefore must be identifiable to the research, through the use of advanced code keys.

The need to identify participants is particularly evident in research on rare diseases. Obviously, there is only scant data on these diseases. The data needs to be shared between research groups, often in different countries, in order to collect enough data for patterns to appear, which can lead to diagnoses and treatments.

An overly dramatic heroic effort to protect privacy would have its own victims.

In an article in the European Journal of Human Genetics, Mats G. Hansson and co-authors develop a different, more sustainable ethical response to the risk of re-identification.

Respecting and protecting participants’ privacy is, of course, a central concern in the article. But protection isn’t the only perspective, since science and health care are ethical values too. And here you need to be able to identify participants. The task the authors assume, then, is that of discussing the risks of re-identification, while simultaneously considering the needs for identifiable data.

The authors are, in other words, looking for a balance between different values: simply because identifiable data are associated with both risks and benefits.

You can read a summary of the article on the CRB website. What I focus on in this post is the authors’ overall approach to research ethics, which doesn’t emphasize the hero/villain/victim opposition of certain dramatic situations.

The public image of research ethics is very much shaped by its function in response to research scandals. But research ethics is usually, and less dramatically, about making everyday life function ethically in a society which contains research. Making everyday life run smoothly is a more complex and important task than playing the hero when everyday life breaks down. In this work, more values and challenges need to be taken into account simultaneously than in emergency scenarios where ethicists, very naturally, focus on protection.

Everyday life may not be as exciting as a research scandal, but if we don’t first and foremost take responsibility for making everyday life work smoothly, as a complex whole, then we can expect more drama.

Keep a cool head and consider the issues from a variety of perspectives!

Pär Segerdahl

Hansson, M. G. et al. The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics, advance online publication, 25 May 2016; doi: 10.1038/ejhg.2016.52

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Approaching future issues - the Ethics Blog

Intending a philosophical system as the truth of life

August 15, 2016

Pär SegerdahlWhat a joy it is to read a real philosopher! This summer I read David Hume and was puzzled by this question: Why is Hume so stimulating to read, when the experts’ comments to his philosophical system are so tedious? If the system is what’s important, shouldn’t the exposition of the system by knowledgeable commentators be just as stimulating?

Is it because Hume’s writes so beautifully and vividly? But even Kant is philosophically more stimulating than the experts’ comments on Kant, and he isn’t known for writing well. What is it that withers away when a philosopher’s system is expounded?

Hume wants to demonstrate how to think about life. The commentator rather wants to establish how to talk about Hume’s system, as one of several historically given systems. The commentator has a bourgeois function: a philosophical grammar teacher who provides instructions for how to reason correctly as a Humean, as a Kantian, as a Husserlian.

I want to say: the scholar’s exposition stands to the philosopher’s work as a grammar book to a living language. What made it so joyful to read Hume was precisely this: spending some time with native speaker; hearing philosophy actually being spoken and thought.

What is it that flourishes in Hume’s philosophical language, but withers away in the scholarly exposition of his system?

I’d say: Hume’s meaning the system as the truth of life. In Hume, life is in focus, not only the system as a conceptual apparatus. Hume’s system germinates in an attempt to intellectually make sense of life. Hume must laboriously make each new thought evident as a true thought about life. The scholar need not make this risky work, but can confidently present the system as a conceptual apparatus that simply exists. Dubious details should, of course, be pointed out and discussed, but doubting the whole project isn’t the commentator’s task. The system was for God’s sake published in the eighteenth century and is much talked-about!

Hume lives more dangerously: “Every step I take is with hesitation, and every new reflection makes me dread an error and absurdity in my reasoning.” This he writes under the heading, “Conclusions of this book,” where one would expect a victorious summary of the system. How could Hume be unsure of his own system, even in the conclusions? It is his creation! Isn’t he its ultimate authority?

The point is precisely that Hume means his system as the truth of something bigger and more difficult to survey. The system is about life itself. What if it fails! What if there is an error in the connection to what the system should be the truth about!

So my question is: How does one mean a philosophical system as the truth of life? Does one make a heroic effort to speak faithfully as a Humean, always calculating “what Hume would have said”? If you wish to become a Humean, you will probably have do something like that. But it wouldn’t suffice for Hume. The system must really be connected to life itself. The thoughts must really be true thoughts about life. This must be scrupulously ascertained, at each new step. Hume continuously makes this work. He takes responsibility for the system vis-à-vis life. He ensures that it satisfies his extraordinary demands as a sincere thinker.

I am prepared to admit that Hume’s thoughts are connected to life. This connection makes his language flourish as a philosophical language. My question is what the connection looks like and how he interprets it.

This post now takes a new turn. After having expressed the joy of reading Hume as a thinker with a living, flourishing philosophical language, I will place a question mark where commentators don’t usually place their question marks. I place my question mark not inside the system, but in Hume’s intending the system as the truth of life. I place my question mark outside of the scholarly focus on the system itself.

When I read Hume, I also find a sort of profound comedy in his work. Not in the system, but in his thinking. What is comical resides in Hume’s utterly honest claims on the system; in his systematic, causal interpretations of the psychological observations he makes. Hume’s explanation of why we feel pride in certain situations, for example, differs from the explanations we normally would give in the same situations.

We can explain: “No wonder he is proud of that chair; it is beautiful and he spent weeks at designing it!” Hume would explain: “No wonder he is proud of the chair; it has qualities that cause pleasure and it has a relationship to the person.”

The combination of “qualities in the object that cause pleasure” and “relationship to the person” must cause pride – according to the principles of Hume’s system. Hume’s explanation is super-general and uses the concepts and rules of the system. He can repeat exactly the same explanation every time someone is proud.

Hume’s systematic explanation of pride has a point that we can all recognize. Suppose I said: “I am so proud of this chair!” But when you ask, “Have you made it yourself?” I answer, “No, I haven’t seen it before, whose is it?” – You wouldn’t understand how I can be proud of a completely foreign chair!

“I cannot be proud of something that doesn’t have a relation to me.” This could serve as a reminder of a pattern in pride as human phenomenon. But Hume interprets this observation as if he glimpsed an underlying causal mechanism – “in the human mind” – which explains why pride isn’t caused in such situations.

This duality is an important reason why it is such a joy to read Hume. His system is based on fine observations of psychological traits of human life, sometimes almost like in a Jane Austen novel. But he interprets his observations as glimpses of general mechanisms – “in the human mind” – that cause these traits.

Here we have the connection to life, and also Hume’s interpretation of it! Hume interprets his observations of traits of human life as if they revealed underlying causal mechanisms (“in the human mind”) that cause these traits. The interpretation provides intellectual control over life, as if no significant feature of life could surprise Hume anymore.

I’ve noted all instances of, “No wonder, then, …” in Hume’s work. There are many! They occur when he has described an everyday phenomenon of life (such as a situation where someone is proud) and used the system to explain it. The system allows him to wander through life and exclaim, “No wonder!” before every characteristic trait he sees. – Life intellectually explained!

I thus find an unstated dualism in Hume’s thinking:

  • Phenomena of life / Underlying system

This dualism isn’t part the system and is therefore not in focus for the scholar who expounds the system. The dualism is located in Hume’s claim on the system as the truth of life. It is resides in Hume’s thinking, in his conscientious work to make the system true about life. It is the taken for granted form of systematic philosophical thought.

The dualism intellectualizes life as if it borrowed its traits from general principles. This tendency to always take what is general for what is primary and fundamental – as underlying life – is an intellectual instinct that I believe that today’s philosophy should scrutinize and overcome.

It is about rescuing the connection to life, clearly discernible in Hume’s thinking, from the interpretation of it as a connection to an intellectualized source of all phenomena of life. The connection needs to be rescued, so that those who philosophize about life, as Hume did, can mean their observations as observations of life; rather than as life-penetrating insights into an underlying primary order, which only would be a repetiton, in sublimated form, of what was seen.

The obstacle on our path is that this new question mark, placed not in the system but in the claim on it as the truth of life, will be incomprehensible to experts in the field. Philosophy can flourish again only by freeing itself from the current scholarly grip on it.

Pär Segerdahl

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Genetic screening before pregnancy?

June 20, 2016

Pär SegerdahlGenetic diseases can arise in strange ways. So-called recessive diseases require that both parents have the gene for the disease. The parents can be healthy and unaware that they are carriers of the same non-dominant disease gene. In these cases, the risk that the child develops the disease is 25 percent.

In families with a history of some recessive disease, as well as in communities where some serious recessive disease is common, genetic screening before pregnancy is already used – to determine whether couples that are planning a child are, so to speak, genetically compatible.

As these genetic tests have become more reliable and affordable, one has begun to consider offering preconception genetic screening to whole populations. Since one doesn’t know then exactly which genes to look for, it’s not just about screening more people, but also about testing for more recessive traits. This approach has been termed expanded carrier screening (ECS).

In the Netherlands, a pilot project is underway, but the ethical questions are many. One concerns medicalization, the risk that people begin to think of themselves as being more or less genetically compatible with each other, and feel a demand to test themselves before they form a couple and plan children.

Sweden has not yet considered offering expanded carrier screening to the population and the ethical issues have not been discussed. Amal Matar, PhD student at CRB, decided to start investigating the issues in advance. So that we are prepared and can reason well, if preconception expanded carrier screening is suggested.

The first study in the PhD project was recently published in the Journal of Community Genetics. Interviews were made with clinicians and geneticists, as well as with a midwife and a genetic counselor, to examine how this type of genetic screening can be perceived from a Swedish health care perspective.

Ethical issues raised during the interviews included medicalization, effects on human reproductive freedom, parental responsibility, discrimination against diseased and carriers, prioritization of resources in health care, as well as uncertainties about what to test for and how to interpret results.

The study serves as an empirical exploration of the ethical issues. Some of these issues will be examined philosophically further on in Amal Matar’s project.

(Read more about Amal Matar and her work at CRB here.)

Pär Segerdahl

Matar, A., Kihlbom, U., Höglund, A.T. Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS) – a qualitative study. Journal of Community Genetics, DOI 10.1007/s12687-016-0268-2

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Research ethics is not only protection ethics

June 6, 2016

Pär SegerdahlSystems for ethical review of research would never have been developed if it were not for the need to protect research participants from being exploited, exposed to excessive risks, or injured.

Considering how several research scandals strengthened this protection motive, it is easy to believe that protection is the sole aim of research ethics. This is not the case.

The starting point has always been that research is something worthwhile; something ethically important. Medical research provides knowledge that can lead to better diagnoses and more effective treatments. The humanities and social sciences can provide knowledge that supports more informed debates and more thoughtful political decisions.

Ethics review is about striking a balance between ethical values. Are the risks in proportion to the value of the research? Are the risks minimized, or can the research questions be examined more safely? Are research participants properly informed about the research purpose and the risks that participation might entail? Do they get the opportunity to freely decide whether to participate or not?

The “novelty” of research ethics is thus the balancing of ethical values. It’s not that ethical values are turned against research, for research itself is regarded as an ethical value. Also researchers are learning to balance values when they plan their research. The balancing is done not only in the review system, then, but pervades research itself more and more.

Doing the balancing is rarely easy. Moreover, as already mentioned, it is easy to overlook the starting point: that research is regarded as a value. This invites interpreting research ethics as pure protection ethics, which threatens to make ethics review one-sided.

For these reasons, well-written manuals are needed for members of ethical review boards, and for researchers. Manuals that not only inform about regulations and legislation, but also discuss the difficulties of balancing ethical values, and highlight how research ethics is “balance ethics” and not just protection ethics (except when protection law applies).

A new book, Balanced Ethics Review (Springer 2016), by Simon N. Whitney, is such a manual. It is written from within the American review system. But by openly discussing the difficulties of balancing ethical values, and by bringing to the fore how research ethics functions as “balance ethics,” the book has greater universality. – Perhaps precisely where the need for guidance is greatest.

Pär Segerdahl

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We recommend readings - the Ethics Blog

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