Biobank news: ethics and law

April 23, 2014

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

April 16, 2014

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?

April 9, 2014

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?

April 1, 2014

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

March 19, 2014

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?

March 12, 2014

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

March 5, 2014

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


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