Author: Pär Segerdahl (Page 33 of 44)

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

9 April, 2014 / Pär Segerdahl / 0 Comments

Preconception 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

Better not to know? (by Mirko Ancillotti)

1 April, 2014 / Pär Segerdahl / 0 Comments

In 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

Research ethics as moral assurance system

19 March, 2014 / Pär Segerdahl / 0 Comments

Modern 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

How does biotechnology become real?

12 March, 2014 / Pär Segerdahl / 0 Comments

Seeing 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

The risk with knowing the risk

5 March, 2014 / Pär Segerdahl / 0 Comments

Informing 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

Is it human fan club mentality?

26 February, 2014 / Pär Segerdahl / 0 Comments

Philosophers often put humans on display as beings that have some unique quality, like rationality or conceptual powers. And conversely they present animals as beings that lack that quality.

What comparison underlies such a notion of “human positivity” and “animal negativity”?

One could suspect that the dualism arises through a human-centered comparison. As if intellectual football fans treated football as the sport with which all sports are to be compared, which would turn football into the sport that has the unique qualities of full-fledged sport, while all other sports are grouped together as hollow sports that lack what football has.

One could thus suspect that philosophy implicitly employs a human standard for its comparisons, as if philosophy was a human fan club, busy to secure power and exclusive membership rights.

I have my doubts, though, since football can be surveyed in a way that human life cannot be. It is hardly possible to place “us” at the center, since we don’t know who “we” are as football fans know what football is.

Whatever is placed at the center, it will have to be an idealization; not actual human lives.

This implies that the philosophical dualism might be unjust not only to animals, but also to humans who breathe and talk and live independently of philosophical ideals and claims about their essence.

Pär Segerdahl

Stress turns ordinary cells into pluripotent stem cells

19 February, 2014 / Pär Segerdahl / 0 Comments

Tissues 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:

Stimulus-triggered fate conversion of somatic cells into pluripotency

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

Self-contradictions of anti-movements

12 February, 2014 / Pär Segerdahl / 0 Comments

One cannot say, “I’m the humblest person in the world,” without displaying arrogance. One cannot protest, “How dare you call me arrogant? My whole life I’ve served individuals who don’t even deserve to tie my shoelaces!” without once again displaying arrogance.

Or listen to this: “Nothing is certain; here is the proof.”

Anti- and post-movements – anti-metaphysics, post-humanism etc. – display similar difficulties of avoiding comical self-contradiction. It is difficult to reject the grandiose ambitions of metaphysics to describe the world order, without trying to describe a world order that evades description.

That is to say: it is difficult to resist the temptation.

Rhetorically brilliant anti-metaphysicians compete contriving the most awe-inspiring neologisms to unveil the world’s essential evasiveness… a nomadic world of quasi-objects, hybridization and crossings of borders.

“How dare you call me a pretentious metaphysician? I know everything about the world’s inexplicability!”

Pär Segerdahl

Why do cancer patients participate in clinical trials?

5 February, 2014 / Pär Segerdahl / 0 Comments

Hearsay 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:

“Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials”

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

Scholastic reasoning versus modern cell biology

30 January, 2014 / Pär Segerdahl / 0 Comments

Embryonic 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

Author: Pär Segerdahl (Page 33 of 44)

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

Better not to know? (by Mirko Ancillotti)

How does biotechnology become real?

The risk with knowing the risk

Is it human fan club mentality?

Stress turns ordinary cells into pluripotent stem cells

Self-contradictions of anti-movements

Scholastic reasoning versus modern cell biology

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