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

Category: In the research debate (Page 30 of 37)

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

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

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

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

How does biotechnology become real?

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogSeeing things with our own eyes, not just hearing about them, makes a difference. Words certainly arouse images, but they are our own images of what we never saw.

This is a challenge for the rapid development in biotechnology. Genetically modified organisms are created, in vitro fertilization is practiced, stem cells are grown, and biobanks are constructed.

For most of us this is only hearsay. The words we hear arouse images, but as I said: images of what we never saw with our eyes. When we then respond to new forms of biotechnology, perhaps with anxiety or a sense of unreality, it is often our own images we respond to.

It’s like trying to form an opinion of a person who is hidden in a cloud of rumors. What a difference it makes to actually meet the person, and not only respond to the images that the rumors create within us.

Increased popular scientific efforts don’t automatically solve the problem. On the contrary, relying too much on the visual potential of, for example, computer animation can contribute to the cloud formation. People are stimulated to create even further images of what they never saw.

So how can biotechnology be made real? I believe: by showing what can be shown. Just seeing a genetically modified tomato or a person who underwent stem cell treatment makes biotechnology more real to me than any image of the DNA helix or stem cell differentiation can.

Seeing what can be shown – often practical applications – doesn’t necessarily make me approve of all forms of biotechnology, but I can discuss the technology without being too much distracted by my own cloud of images. I can discuss what became real.

How new forms of biotechnology can become real for the public is discussed in a new article in the Croatian Medical Journal, written by Anna Lydia Svalastog, Joachim Allgaier, Lucia Martinelli, and Srecko Gajovic.

They introduce the notion of Knowledge Landscapes to think more concretely visually about communication with the public about new forms of biotechnology. They emphasize science museums as one arena where biotechnology can be discussed as a reality rather than as an urban myth.

Show what can be shown.

Pär Segerdahl

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

The risk with knowing the risk

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogInforming individuals about their genetic risks of disease can be viewed as empowering them to make autonomous decisions about their future health.

But we respond to risk information not only as rational decision makers, but also with our bodies, feelings and attitudes.

An American study investigated elderly people whose genetic test results showed a predisposition for Alzheimer’s disease. One group was informed about the risk; the other group was not.

In subsequent memory tests, those who were informed about the risk performed markedly worse than those who weren’t informed.

Knowing the genetic risk thus increased the risk of a false positive diagnosis of dementia. The informed participants performed as if they already were on the verge of developing Alzheimer’s.

The risk with knowing the risk is thus a further complication to take into consideration when discussing biobank researchers’ obligation to return incidental genetic findings to individual participants.

Returning information about genetic risks cannot be viewed only as empowering participants, or as giving them valuable information in exchange for contributing to research.

It can also make people worse, it can distort research results, and it can lead to false diagnoses in clinical care.

Pär Segerdahl

We like challenging findings - The ethics blog

Stress turns ordinary cells into pluripotent stem cells

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTissues of the body originally form when “naïve” undifferentiated embryonic stem cells differentiate to form the “mature” cells of specific tissues: liver cells, brain cells, skin cells, and so on.

The mature cells are then locked in their differentiated forms, as if they met their fate.

I recently mentioned that Yamanaka and Gurdon were awarded the Nobel Prize in Medicine in 2012 for their surprising findings about dedifferentiation. Through direct genetic modification of nuclear function, mature cells can be reprogrammed to return to naïve stem-cell states. These dedifferentiated cells are pluripotent and can differentiate again and form a variety of mature cell types.

The rejuvenated cells regain the naïve properties of embryonic stem cells!

In January this year, an article published in Nature reported that the genetic reprogramming can be achieved more easily, without direct nuclear manipulation.

All you need to do to dedifferentiate mature cells, according to this article, is to subject them to stress: like an acid environment. Not all but some of the mature cells will be freed from their fate as liver or skin cells and return to naïve pluripotent states.

An easy to read summary can be found in BioEdge, and here is a link to the article:

Using mature cells to create stem cells with properties of embryonic stem cells might thus be easier than expected. In fact, the new findings weren’t even made in a stem-cell laboratory.

The ethical responses to the findings are not as thrilling as the findings. Some welcome the possibility of creating “ethical stem cells” that avoid the controversy about embryonic stem cells. Others see “new ethical issues” on the horizon.

These responses are characteristic of a routine view of ethical assessment as a static one-way process: ethicists assess others. But these findings indicate that processes in the opposite direction are possible as well, since they seem to challenge ethical assumptions about the unique function of the embryo.

I’m tempted to extend Thomas Kuhn’s notion of scientific revolutions to ethics. The new findings could function as anomalies for ethically paradigmatic ways of thinking about the embryo.

As stress turns mature cells into naïve pluripotent stem cells, these findings could stress some ethicists to return to more open-minded states that in the future can differentiate in new and unexpected directions.

Pär Segerdahl

We like challenging findings - The ethics blog

Why do cancer patients participate in clinical trials?

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogHearsay and good intentions won’t suffice. If a new treatment is chosen for a patient with cancer, one must first have seen that the treatment is at least as efficient as the conventional treatment. And one must have looked at side effects and right dosages.

Seeing this, however, presupposes that some patients agree to test the treatment… before one has clearly seen its efficacy. This is done in so-called clinical trials arranged in phases where first side effects and dosages are studied, and finally efficacy is compared to conventional treatment.

This gives rise to questions: Why are some patients prepared not to be patients on the same conditions as other patients? Why are they prepared to test a treatment one hasn’t yet seen is most efficient?

Do they understand what they agree to participate in? Since they participate in a study of a new treatment, do they understand that in order to see its efficacy, some in the group will be given just the conventional treatment?

Tove Godskesen, PhD student at CRB, noticed that such questions were relatively unexamined in the context of Swedish clinical cancer trials. She therefore did a survey study with cancer patients in several Swedish phase 3 clinical trials (where experimental and conventional treatments are compared).

Godskesen’s study (done together with Mats G. Hansson, Peter Nygren, Karin Nordin and Ulrik Kihlbom) was recently published online in the European Journal of Cancer Care:

The article contains many interesting findings. For example, patients-participants seemed generally to have understood the information about the “seeing” that they were willing to support by not being patients quite the same way as others.

Most important and salient, however, was that patients have two main motives for participating. They hope for a cure; and they wish to help future patients.

I would like to say: Patients hope that they will be given the new treatment already and that it will turn out to be more efficient than the conventional one. And they want to help future patients get the treatment that one has seen is most efficient.

Sight and future, patient role and research participant role, hope and altruism, in complex association.

Pär Segerdahl

We have a clinical perspective : www.ethicsblog.crb.uu.se

Scholastic reasoning versus modern cell biology

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogEmbryonic stem cell research can find effective treatments for a wide range of currently untreatable diseases. No wonder embryonic stem cell research can be perceived as an important practice.

A human embryo can develop into someone’s child, who breathes, talks and lives. No wonder embryonic stem cell research can be perceived as a controversial practice.

What interests me here is how these two in my view humanly comprehensible perceptions of stem cell research are translated into an intellectual arena called “ethical debate.”

On this arena, forms of reasoning with different historical roots meet to combat each other. The idea is that here finally the issue shall be settled: is embryonic research, as a matter of fact, morally controversial, or is it not?

Or are we rather debating Aristotle versus modern cell biology?

Attempts to prove that the research is controversial bear witness of a legacy from the metaphysics of Aristotle. The human embryo is supposed to have a unique potentiality to become a person: a potentiality so actively present in the embryo that the embryo is to be understood as a “prenatal person” or as a “potential person.”

Attempts to disprove such scholastic claims instead rely on the latest scientific evidence in cell biology. In 2012, Shinya Yamanaka and John B. Gurdon were awarded the Nobel Prize in Medicine for their work on what is called “dedifferentiation.” Stem cells derived not from embryos but from, for example, skin cells can be genetically induced to regress into less differentiated states that in turn can differentiate into various directions.

These findings are invoked in an article in The American Journal of Bioethics to finally take leave of the argument from potentiality:

  • “Technically speaking, fertilized egg cells (earliest embryos), iPSCs (induced pluripotent stem cells), and skin cells are all potential ‘baby-precursors,’ in part due to modern cell biology.”

So much for the unique potentiality of the human embryo: a skin cell will suffice.

To what extent do such debates concern the two perceptions of stem cell research in their human comprehensibility?

Pär Segerdahl

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

Readings on biobank regulation

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogToday I recommend three short and instructive readings on biobanking:

The European Parliament voted in October 2013 on an amended proposal for a new European Data Protection Regulation. In a newsletter from CBR and BBMRI.se, the legal scholars Jane Reichel and Anna-Sara Lind explain implications for biobank research:

A new law on biobanks entered into force in Finland in September 2013. The law allows broad consent for future research and enables use of already collected samples. It also gives donors a stronger position and better protection of their integrity, Joanna Forsberg and Sirpa Soini write in Nature:

International guidelines on biobank research diverge, not least concerning the specificity of the consent and the use of already collected samples and waiver of consent. These ambiguities are discussed in the European Journal of Epidemiology, in an article by Joanna Forsberg, Mats G. Hansson and Kathinka Evers:

These texts help clarifying the complicated regulatory framework.

Pär Segerdahl

We recommend readings - the Ethics Blog

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