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

Author: Pär Segerdahl (Page 31 of 43)

Intellectualizing morality

There is a prevalent idea that moral considerations presuppose ethical principles. But how does it arise? It makes our ways of talking about difficult issues resemble consultations between states at the negotiating table, invoking various solemn declarations:

  1. “Under the principle of happy consequences, you should lie here; otherwise, many will be hurt.”
  2. “According to the principle of always telling the truth, it is right to tell; even if many will be hurt.”

This is not how we talk, but maybe:

  1. “I don’t like to lie, but I have to, otherwise many will be hurt.”
  2. “It’s terrible that many will suffer, but the truth must be told.”

As we actually talk, without invoking principles, we ourselves take responsibility for how we decide to act. Lying, or telling the truth, is a burden even when we see it as the right thing to do. But if moral considerations presuppose ethical principles of moral rightness, there is no responsibility to carry. We refer to the principles!

The principles give us the right to lie, or to speak the truth, and we can live on with a self-righteous smile. But how does the idea of moral principles arise?

My answer: Through the need to intellectually control how we debate and reach conclusions about important societal issues in the public sphere.

Just as Indian grammarians made rules for the correct pronunciation of holy words, ethicists make principles of correct moral reasoning. According to the first principle, the first person reasons correctly; the other one incorrectly. According to the second principle, it’s the other way round.

But no one would even dream of formulating these principles, if we didn’t already talk as we do about important matters. The principles are second-rate goods, reconstructions, scaffolding on life, which subsequently can have a certain social and intellectual control function.

Moral principles may thus play a significant role in the public sphere, like grammatical rules codifying how to write and speak correctly. We agree on the principles that should govern public negotiations; the kind of concerns that should be considered in good arguments.

The problem is that the principles are ingeniously expounded as the essence and foundation of morality more generally, in treatises that are revered as intellectual bibles.

The truth must be told: it’s the other way round. The principles are auxiliary constructions that codify how we already bear the words and the responsibility. Don’t let the principles’ function in the public sphere distort this fact.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Building European infrastructures for research

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogThe European Union is traditionally about creating an internal market, where goods, services, labor and capital can move freely between member states.

Lately there have been efforts to create also European infrastructures for research, where researchers in the different member states can collaborate more efficiently, and compete on a global “research market.” A new tool for such European governance of research is the European Research Infrastructure Consortium, abbreviated ERIC.

If at least three member states hand in a joint application, the Commission can establish an ERIC – an international organization where the involved member states jointly fund and manage a European infrastructure for research in some area. In November 2013, an ERIC was established for biobank research: BBMRI-ERIC, placed in Graz, Austria.

Understanding what an ERIC is and whether BBMRI-ERIC has tools to make the diverse regulations for biobanking in different EU member states more uniform, is not easy. However, a “Letter” in the European Journal of Human Genetics addresses both issues:

The letter is written by Jane Reichel, Anna-Sara Lind, Mats G. Hansson, and Jan-Eric Litton who is the Director General of BBMRI-ERIC.

The authors write that although the ERIC lacks substantial tools to make the regulative framework for biobanking more uniform, it provides a platform where researchers and member states can collaborate developing better ways of navigating the complex legal and ethical landscape. The ERIC also facilitates administration, owning and running of equipment and employment of staff on a long-term basis, thus enabling a time perspective proper to research infrastructures (rather than individual research projects). It also provides opportunities to develop common standards for biobanking activities (e.g., handling of samples) that make biobanks function better together.

Finally, because of the required regular contacts with the Commission and representatives of all EU member states, channels are opened up through which the interests of research can be communicated and influence policy areas like data protection.

Read the letter if you are interested to know more about this new way of building European infrastructures for research.

Pär Segerdahl

Part of international collaborations - the Ethics Blog

Open biobank landscapes

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogLast week I wrote about the transition from organizing science as a tree of knowledge that once in a while drops its fruits onto society, to organizing research as part of knowledge landscapes, where the perspective of harvesting, managing and using the fruits is there from the beginning.

That the proud tree is gone might seem sad, but here we are – in the knowledge landscape, and I believe the development is logical. As a comment to the previous post made clear, many fruits fell from the old tree without coming into use.

The notion of knowledge landscapes sheds light on the attempt by BBMRI.se to build infrastructure for biobank research. The initiative can be viewed as an attempt to integrate research in broader knowledge landscapes. Supporting research with an eye to the interests of patients is a new way of managing research, more oriented towards the fruits and their potential value for people than in the era of the tree of knowledge.

The novelty of the infrastructural approach to biobanking isn’t always noticed. In Sweden, for example, the biobank initiative LifeGene was met with suspicion from some quarters. In the debate, some critics portrayed LifeGene as being initiated more or less in the interest of a closed group of researchers. Researchers wanted to collect samples from the population and then climb the tree and study the samples for god knows which purposes.

Those suspicions were based on the old conception of science as a high tree, inaccessible to most of us, in which researchers pursue “their own” interests. The aim with LifeGene, I believe, is rather to integrate research in a knowledge landscape, in which research is governed more by the interests of patients.

We mustn’t underestimate the challenges such a reorganization of research has to deal with, the forces that come into play. I merely want to suggest a new way of surveying and thinking about the transition – as a change from approaching science as a high tree of knowledge to integrating research in open knowledge landscapes.

If you want to read more about research in knowledge landscapes, you find Anna Lydia Svalastog’s article here, and the network where these ideas originated here.

In September 2014, the third conference, HandsOn: Biobanks, is organized, now in Helsinki. Academics, industry, doctors, patient groups, policy makers, public representatives and legislators are invited to share knowledge and experiences. As in previous conferences in the series, there is an interactive part, The Route, in which biobanking processes can be followed from start to finish, with ample opportunities for discussion.

View the conference as part of maintaining open biobank landscapes, with research as one of several integrated components.

Registration is open.

Pär Segerdahl

We like broad perspectives : www.ethicsblog.crb.uu.se

From tree of knowledge to knowledge landscapes

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogScience was long revered as free and self-critical pursuit of knowledge. There were hopes of useful applications, of course, but as fruits that once in a while fall from the tree of knowledge.

In a thought-provoking article in the Croatian Medical Journal, Anna Lydia Svalastog describes how traditional reverence for science and devout hope of fruits from above in practice disappeared with World War II.

Researchers who saw science as their calling instead found themselves called up for service in multidisciplinary projects, solving scientific problems for politically defined aims. Most famous is the Manhattan project, intended to develop an atomic bomb to alter relative military strengths.

This way of organizing research has since then become the rule, in a post-war condition in which research initiatives aim towards altering relative economic strengths between nations. Rather than revering science, we value research in project format. We value research not only in economic terms, I want to add, but also in terms of welfare, health and environment.

From the late 1970s, political and economic interest in research shifted from physics to the life sciences and biotechnology. Svalastog mentions examples such as genetically modified organisms (GMO), energy wood and biological solutions to pollution. It is difficult to say where research ends and applications begin, when interest in applications governs the organization of research from the outset.

The main question in the article is how to understand and handle the new condition. How can we understand the life sciences if society no longer piously anticipates applications as fruits from above but calculates with them from the beginning?

Svalastog uses a new concept for these calculated fruits: bio-objects. They are what we talk about when we talk about biotechnology: energy wood, GMO, cultivated stem cells, vaccines, genetic tests and therapies, and so on.

The point is that science doesn’t define these objects on its own, as if they still belonged to science. Bio-objects are what they become, in the intersection of science, politics and society. After all, vaccines don’t exist and aren’t talked about exclusively in laboratories, but a parent can take the child to the hospital for vaccination that was decided politically to be tax-financed.

Instead of a tree of knowledge stretching its fruit-bearing branches above society, we thus have flatter knowledge landscapes in which a variety of actors contribute to what is described in the article as bio-objectification. The parent who takes the child to the hospital is such an actor, as is the nurse who gives the vaccine, the politicians who debate the vaccination program, the journalists who write about it… and the research team that develop the vaccine.

Why do we need a concept of bio-objectification, which doesn’t reverently let the life sciences define these objects in their own terms? I believe, to understand and handle our post-war condition.

Svalastog mentions as an example controversies about GMO. Resistance to GMO is often described as scientifically ignorant, as if people lived in the shadow of the tree of knowledge and the solution had to consist in dropping more science information from the tree. But no links with levels of knowledge have been established, Svalastog writes, but rather with worldviews, ethics and religion.

What we need to handle our condition, Svalastog maintains, is thus the kind of research that was neglected in the post-war way of organizing research. We need humanistic research about knowledge landscapes, rather than instinctive reactions from a bygone era when the tree of knowledge was still revered.

I presume that this humanistic research too will be performed in project format, where humanistic scholars are called up for research service, studying the contexts within which bio-objects are understood, handled and valued.

Undeniably, however, some interesting thoughts about our condition here hover more freely above the knowledge landscapes.

Pär Segerdahl

Part of international collaborations - the Ethics Blog

Perplexed by autonomy

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogDuring the seminar this week we discussed an elusive concept. The concept is supposed to be about ordinary people, but it is a concept that ordinary people hardly use about themselves.

We talked about autonomy, which is a central notion in ethical discussions about how patients and research participants should be treated. They should be respected as persons who make their own decisions on the basis of information about the options.

The significance of this is evident if we consider cases where patients are given risky treatments without being informed about the risks and given the opportunity to refuse treatment. Or cases where vulnerable persons are forced to function as research subjects in various experiments.

“Respect people’s autonomy!” is comprehensible as a slogan against such tendencies.

What makes the concept more elusive, however, is that increasingly it is used more speculatively as the name of a valuable quality in the human, perhaps even the superior and most distinctive one. Instead of functioning as a comprehensible slogan in a real context, the notion becomes utopian, demanding that individuals constantly be informed about options and making decisions.

Autonomy becomes the superior imperative in all areas of human life.

Such a totalized imperative displaces the meaning of these areas of life, for example, the meaning of health care. Health care no longer seems being primarily about treating people’s diseases (while respecting their autonomy), but as being about developing diagnoses and treatments that give individual patients more information and options to choose between.

The concept of autonomy becomes a utopian construct that does not face the real-life challenges that made the slogan comprehensible, because it aims towards an ideal solution without need of the slogan. Every human practice is turned into an arena that first of all supports autonomy.

The speculative concept is somewhat self-contradictory, however, since it is imposed paternalistically as the essence of the human, while the humans concerned hardly use it to understand themselves. Well, then we’ll have to turn them into such individuals!

No, I confess I’m quite perplexed by the utopian-intellectual refinement of otherwise comprehensible slogans like autonomy, justice and freedom. These efforts appear like the noblest efforts of humankind, and yet they run amok with our words and displace the meaning of every human practice.

Pär Segerdahl

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

Biobank news: ethics and law

The second issue of the newsletter from CRB and BBMRI.se is now available:

This April issue contains four interesting news items about:

  1. New international research cooperation on genetic risk information.
  2. The new Swedish law on registers for research on heritage, environment and health.
  3. The legislative process of developing a European data protection regulation.
  4. A new article on trust and ethical regulation.

You’ll also find a link to a two-page PDF-version of the newsletter.

Pär Segerdahl

We recommend readings - the Ethics Blog

The claim of thoughtfulness

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogPhilosophy has an aura of pretentiousness. Philosophers seem to make such ambitious claims about the essence of everything. About morality, about mind, about language… usually without doing any empirical research!

From where do they derive their claims? Are they sitting in armchairs just awaiting “truths” from out of nowhere? Is philosophy a form of “easy science” where one goes straight to the results without doing the research work needed to substantiate them?

But there are certain peculiarities in the claims, and in the style of address, which disappear in this image of philosophy as “easy science.”

Researchers can write didactically, informing the reader about results of their research. Science writers thus typically adopt a “von oben” attitude that is perfectly legitimate, since research sheds light on states of things that are unknown to the reader.

If philosophers adopt the didactic style of a science writer, the result is comical: “My thought processes during the past ten years demonstrate that morality basically is…,” and then follows information about the essence of morality!

The image of philosophers as pretentious “armchair researchers” expresses this comedy.

Philosophers certainly make claims, but these are claims that can be questioned by a reader who thinks further than the author. Philosophical writers expect readers to make objections that possibly are as powerful as the writer’s own. This “detail” is overlooked in the image of the pretentious armchair philosopher.

Philosophical writers expose their entire thought processes, so that the reader can think with – and against – the author. Philosophical writers address readers as peers in thinking. Together, we think for ourselves.

Perhaps the claim of scientific expertise has become so dominant that we no longer hear the claim of thoughtfulness.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Genetic compatibility as a new dimension of partnership? (By Julia Inthorn)

JULIA INTHORN is associated researcher and working on genetic risk information and pre-conceptional genetic screeningPreconception genetic carrier tests can inform a person if he/she is carrier of a recessive disease. In case the partner is also a carrier of the same disease, the couple has an increased risk (usually a 1 in 4 risk) to have a child with this disease. Current research in genetics works on developing tests for up to 600 of such recessive inherited diseases. Couples can use this test when planning a pregnancy and check if they are both carriers of the same disease.

In case a couple who are both carriers wants to rule out the risk of having an affected child they have different options: Medical options range from using IVF and preimplantation genetic tests to prenatal test (and the option of abortion in case the child is affected) to using donor gametes. Non-medical options are refraining from having children, adopting children or changing partner.

Preconception genetic carrier screening adds a new dimension to the question of family planning and partnership. In the rhetoric about partnerships – in online tests, horoscopes and questionnaires of online dating services – compatibility of partners is already a great issue connected to questions like matching in taste and interests but also similarity of background.

Genetic (in)compatibility is a new hitherto undiscussed aspect of partnership and marriage. While the idea of testing the genetic compatibility of partners might seem very unromantic to some the question of raising a seriously ill child together poses some important questions: questions of how partners imagine to be parents together, how they envision responsibility for a child and what kind of medical and non medical measures they think are acceptable.

Thinking about integrating genetic information into our concepts of family will challenge our ideas of responsible parenthood. We need not only to make decisions carefully but also to understand how decisions influence possible future plans: Building on a partnership irrespective of genetics leads to other questions and options in family planning than checking genetic compatibility during dating.

Discussions about integrating new genetic information into our concepts of family planning should address what options are most important and how to open up rooms of choices.

Julia Inthorn

Approaching future issues - the Ethics Blog

Better not to know? (by Mirko Ancillotti)

Inmirko-ethicsblog medical ethics a distinction is commonly made between negative and positive autonomy. One’s negative autonomy is exercised in refusing medical care or refusing some specific treatment. Positive autonomy is the right to choose a specific treatment (within what is available and allowed). Expressing a preference for not being informed about some medical condition seems to exercise negative autonomy.

Several criteria define the autonomy of a person in medical ethics, including knowledge. The knowledge a person has is not simply derived from the quantity of information made available, but by the real information that the subject is able to understand and use in the assessment. It can be said, then, that under this perspective, the more knowledge one has the more autonomous one is.

To illustrate the role of knowledge in autonomy, consider two couples with a family history of genetic diseases. In both cases the woman is pregnant. Couple 1 doesn’t want to make any genetic test, because “whatever the result we would never consider abortion an option.” Couple 1 has a set of values that is not compatible with abortion. Couple 2 has the same values and does not consider abortion as a feasible option. Nonetheless, couple 2 chooses genetic testing and the result of the test is a very high likelihood of an impaired offspring. Though knowing this, couple 2 decides to have the baby too.

The decision (to have the baby) of couple 1 and couple 2 is the same, but is reached through different paths. Couple 1 didn’t wish to know, it exercised a kind of negative autonomy. Couple 2 exerted a kind of positive autonomy deciding to gain knowledge about the condition (actual or likely) of its offspring. They displayed different attitudes toward knowledge, but both made a kind of autonomous choice. Couple 1 didn’t want to test its offspring, and one may be tempted to say that it didn’t put its values to test in the light of knowledge possible to attain, whereas couple 2 in testing its offspring also gauged the strength of the values on the basis of which they made their decision.

I would say that the couples’ first choices to know/not to know are equally autonomous. Henceforth, however, the couples’ paths diverge and couple 2’s final decision (to have the baby) is a more autonomous one, because it uses more relevant knowledge. Couple 1’s preference for negative autonomy (not to know) leads, on this account, to a less autonomous final decision (to have the baby).

Mirko Ancillotti

We like ethics : www.ethicsblog.crb.uu.se

Research ethics as moral assurance system

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogModern society seems to be driven by skepticism. As philosophers systematically doubted the senses by enumerating optical and other illusions, our human ability to think for ourselves and take responsibility for our professional activities is doubted by enumerating scandals and cases of misconduct in the past.

The logic is simple: Since human practices have a notorious tendency to slide into the ditch – just think of scandals x, y and z! – we must introduce assurance systems that guarantee that the practices remain safely on the road.

In such a spirit of systematic doubt, research ethics developed into what resembles a moral assurance system for research. With reference to past scandals and atrocities, an extra-legal regulatory system emerged with detailed steering documents (ethical guidelines), overseeing bodies (research ethics committees), and formal procedures (informed consent).

The system is meant to secure ethical trustworthiness.

The trustwortiness of the assurance system is questioned in a new article in Research Ethics, written by Linus Johansson together with Stefan Eriksson, Gert Helgesson and Mats G. Hansson.

Guidelines, review and consent aren’t questioned as such, however. (There are those who want to abolish the system altogether.) The problem is rather the institutionalized distrust that makes the system more and more formalized, like following a checklist in a mindless bureaucracy.

The logic of distrust demands a system that does not rely on the human abilities that are doubted. That would be self-contradictory. But thereby the system does not support human abilities to think for ourselves and take responsibility.

The logic demands a system where humans become what they are feared being.

The cold logic of distrust is what needs to be overcome. Can we abstain from demanding more detailed guidelines and more thorough control, next time we hear about a scandal?

The logic of skepticism is not easily overcome.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

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