Do the children have a right to know about their genetic parents and do they have a right to be recognized by the countries of their contractual parents? What are the rights of surrogate mothers?

These and related questions will be discussed at an upcoming conference,

• Reproductive technology and surrogacy. A global perspective
• Reykjavik August 25-27, 2013,

organized by The Nordic Committee on Bioethics.

Participation is free of charge. Young researchers (mainly PhD students) are invited to submit an abstract no later than May 20.

More information about abstracts, programme and registration can be found on the website of the Nordic Committee on Bioethics.

If you want to participate, register no later than August 15.

Pär Segerdahl

The article provoked strong reactions and I too felt I had to comment on the article here on The Ethics Blog.

What’s so provocative? I’m not so sure it is the conclusion that if we allow abortion we also should allow abortion of newborns. The two philosophers actually never concluded with any practical recommendations. They only wanted to theoretically explore the logic in the arguments for abortion.

And maybe this is what’s so provocative, or rather tragi-comical: the spirit in which one approaches questions of life and death as an entrepreneur might use the annual report to consider his reasons for terminating a project that can become a burden for the company.

Recently, the same journal reissued the article; this time with two editorials and a number of comments by ethicists (here).

The reissuing of the article reaffirms the attitude that the burning hot questions of life and death should be discussed as a rational entrepreneur manages his firm.

Should we allow infanticide? We’ll have to postpone decision until we’ve received the annual report from the neuroscientists on neonates’ capacity for thought.

Pär Segerdahl

The problem, which I highlighted on The Ethics Blog, is that the new proposal applies also to research. Presently there is an exception for scientific research about health and disease. The proposed revision of the privacy regulation, however, allows no exceptions.

Every person who has given data to a register must according to the new proposal be asked for consent each time researchers want to study some new disease pattern. Patient data can never be used in research without specific consent, and not even historical registers and data from diseased persons are given exception in the new proposal.

A recent article in Nature Reviews Genetics by Deborah Mascalzoni et al. highlights a patient group that is especially vulnerable to the proposed revision: patients suffering from rare diseases. In Sweden a disease is defined as rare if it affects less than a hundred persons in a million.

Data on rare diseases are, as a matter of course, rare. We therefore know little about these diseases and it is difficult to develop effective medical treatments. To achieve statistically significant analyses, researchers must typically share data over national borders. Every lost piece of data about rare diseases can mean dramatically impaired prospects of new drugs and treatments for these patient groups.

Rare diseases are thus a further strong reason for maintaining the current exception for scientific research in the data protection legislation. Read more on the CRB website.

Pär Segerdahl

At a seminar, Jennifer Viberg recently discussed a well-known recommendation for when participants should be informed about incidental findings:

• Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations

During the seminar it became increasingly clear how the authors of the recommendation were proceeding. They started out from how one already handles incidental findings in a more familiar field, namely, imaging studies of the internal organs of the human body. They then generalized that policy to the less familiar case of genomic biobank research.

When researchers produce images of the internal organs of the human body they may accidentally discover, for example, tumors in individual research participants. It is obvious that participants should be contacted about such findings so that action can be taken.

The problem when one generalizes from a field with developed policy to a less familiar field, however, is the risk that false analogies govern the generalized policy. By treating imaging studies as paradigm case of individual findings, it might look as if biobank researchers produce images; images of the genome that incidentally reveal individual divergences against which action can be taken – like when a tumor is operated.

The article does not emphasize the fact that incidental findings in biobank research more typically would concern highly complex and difficult to interpret information about increased individual genetic disease risks.

If I have a tumor, it exists within my body and it can be surgically removed. But if I have an increased genetic disease risk, what do I have and in what sense can it be removed? Does “actionability” have the same meaning for diseases and for increased disease risks?

These and related questions about differences are not emphasized in the article. On the contrary, one seems to be in a hurry to generalize a familiar routine to a new field.

Transferring lessons from familiar to less familiar fields seems reasonable. If one neglects the one-way nature of the approach, however, it easily inflicts blindness to essential differences. In her dissertation work, Jennifer Viberg wants to avoid this pitfall.

Pär Segerdahl

• “In all ‘science of morals’ so far one thing was lacking, strange as it may sound: the problem of morality itself; what was lacking was any suspicion that there was something problematic here.”

What did Nietzsche mean? He seems to have been thinking of a very human tendency, namely, that of assuming that we already know what morality demands, at least roughly. The tendency, then, is to treat morality as given. Every sane person knows it intuitively!

The task of moral philosophy, identified on the basis of this tendency, becomes the following: dig deep enough to find the ultimate foundation of morality; or, fly high enough to catch sight of the ultimate moral principles.

How could Nietzsche view this daring work of digging and flying as being naïve to morality as a problem? People generally don’t ask these ultimate questions about morality. They don’t venture uncertain digging and flying expeditions. Asking the ultimate questions about morality seems anything but naïve.

Although daring on the assumption that morality is given, these ethical expeditions come too late, Nietzsche suggests. If we had been digging and flying a little bit earlier in the research process, we would have discovered that morality isn’t given:

• “Just because our moral philosophers… were poorly informed and not even very curious about different peoples, times, and past ages – they never laid eyes on the real problems of morality; for these emerge only when we compare many moralities.”

We don’t live in a lukewarm condition of moral unity and certainty. There are different forms of moral sensitivity and we occasionally experience crises of uncertainty. We change our firmest certainties and even view each other’s (and our own earlier) certainties as absurd.

You may think what you like about Nietzsche’s own moral tendency, but he helps us identify morality as a philosophical problem in a more comprehensive way than if we defined the problem on the basis of the human tendency of moral introversion described above.

Morality has two faces. It consists not only of familiar certainties apparently in need of foundations. It consists also of uncertainty, change, and diversity. Certainty turns into uncertainty; and uncertainty into certainty. There is a dynamics here that we fail to see when we give in to the temptation to assume that morality already is given as a set of intuitive certainties.

I want to change Nietzsche’s notion of the task on one point. “Comparing many moralities” may not be the most useful ethical expedition if it is not combined with other investigations, since it may overemphasize facts that make all expressions of moral certainty seem idle; as a deceitful facade that we ought to get rid of once and for all.

The work we need to do rather is describing the two faces of morality simultaneously: achieving an overview of the movements back and forth between certainty and uncertainty.

Morality is stability and certainty and it is change and uncertainty.

Pär Segerdahl

Thus dramatically a recent article in The Lancet Oncology can be summarized, written by Mats G. Hansson at CRB together with Gert Jan van Ommen, Ruth Chadwick and Joakim Dillner.

People who provide data to research registers are not exposed to physical risks, like participants in interventional research. The risks associated with register-based research are informational: unauthorized release of information about participants. One might ask if it even makes sense to say that people “participate in research” when researchers process large data sets.

Patients (and people in general) have significant protection from disease thanks to register-based research. For example, it is estimated that the HPV vaccine will save about 200 women from dying in cervical cancer each year, in Sweden alone. This cancer-preventive treatment became possible because researchers had access to samples dating back to the 1960s providing evidence for a causal connection between a certain virus infection and cervical cancer later in life.

• Despite this vital value in biobanks and registers,
• despite the fact that risks are only informational,
• despite rigorous safety routines to prevent unauthorized spread of information,
• despite the fact that researchers don’t study individuals but statistical patterns, and
• despite the question if people really are “participants” in register-based research,

the EU committee proposing the new directive treats the integrity of “research participants” as so pivotal that researchers who process data not only must be subjected to the same ethical review process as for invasive research, but also must obtain informed consent from each and every one who once gave their data to the register, whenever the researchers want to study a new disease pattern.

Data protection efforts easily lose their sense of proportions, it seems, at least concerning register-based research. Not only is one prepared to expose patients to greater physical risks in order to protect research participants from (already rigorously controlled) informational risks.

One also is prepared to disturb data providers who hardly can be described as “participating” in research, by forcing researchers to recontact them about informed consent. Not only on one occasion, but time and again, year after year, each time a new disease pattern is explored in the registers. That’s what I call privacy intrusion!

Pär Segerdahl

1. PhD position in the field of Research Ethics/Bioethics. This position has two possible research focuses:

• (a) Regulating research misconduct – ethics and law reconsidered.
• (b) Ethical issues on preconception genetic testing.

2. PhD position in the field of bioethics/philosophy of mind. This position has the following possible research focuses:

• (a) Conceptual and empirical analyses of the nature and function of consciousness in the light of modern neuroscience and philosophy of mind.
• (b) How consciousness can be accessed neurotechnologically.
• (c) Clinical studies of consciousness of patients with disorders of consciousness and ethical analyses of the results.

Read more about the PhD projects and the application in the links above. If you are interested we look forward to receiving your application no later than April 22, 2013.

Pär Segerdahl

Anna Lydia Svalastog at CRB recently published an article about genetic research on the Sámi people in Sweden. She highlights ethical problems associated with the fact that the Sámi focus in these studies is not made transparent.

Svalastog was surprised to discover that 50 years of genetic research on the Sámi people was invisible in the biobank register at the Swedish National Board of Health and Welfare. The reason, she guesses, is that ethnicity is considered unacceptable as a basis for creating registers and biobanks.

Still, some registers and biobanks are in practice Sámi, since data collection was carried out in traditional Sámi areas like Karesuando. When Svalastog studied the way research was carried out she found further tendencies to downplay ethnicity, although it was central in practice.

The Sámi focus of the research was downplayed by a more neutral vocabulary of people living in certain geographic areas. Also the questionnaires downplayed ethnicity. Questions could instead concern livelihood, which, however, can function as an indicator of Sámi ethnicity, since reindeer herding is an exclusively Sámi occupation.

Ethnicity can be reconstructed from the answers, then, but in a manner that risks reinforcing old stereotypes, since many see themselves as Sámi without being reindeer herders.

I don’t think that Svalastog is opposed to biobank research about the Sámi people, but her point is that ethnicity, and the fact that the Sámi is a native people, must be made transparent. Otherwise it becomes difficult to discuss and handle the ethical problems that ethnicity can imply.

The article is published in New Genetics and Society. Svalastog highlights the importance of talking about ethnicity, because it is sensitive.

Pär Segerdahl

It could be tempting to think that researchers’ only responsibility is the advancement of scientific knowledge. The use and practical application of that knowledge is the responsibility of others.

The September 11 attacks made that idea much less tenable. Since then, the security sector has pushed the scientific community to take more extensive responsibility for research that could be used to develop, for example, biological weapons.

Do scientists have such a responsibility for how others might use their findings? If they do have responsibility, how is it most appropriately approached in practice? These questions are investigated by Frida Kuhlau at CRB in a dissertation that she defends on March 23:

•  Responsible Conduct in Dual Use Research: Towards an Ethic of Deliberation in the Life Sciences

Kuhlau argues that researchers do have a moral responsibility for research with dual use and she tries to specify the content of that responsibility. It includes, for example, always considering possible negative implications of one’s research; reporting activities of concern; being prepared to occasionally delimit the dissemination of results.

How is such responsibility best approached in practice? The traditional way of taking ethical responsibility for research is by imposing ethical regulatory systems (guidelines, codes, ethical review).

Like Linus Johnsson who defended his dissertation last Saturday, Frida Kuhlau doubts such bureaucratic attempts to ethically regulate research. Researchers need to shoulder the responsibility themselves, learning how to deliberate and take action concerning research with dual use.

Shouldering responsibility does not mean, however, doing it alone. Individual researchers normally don’t have all the competencies needed to reasonably assess possible risks of research. The scientific community and the security sector are dependent on each other. What is required to take proper responsibility, Frida Kuhlau suggests, is therefore an ethic of conversation and deliberation.

Taking moral responsibility for research with dual use presupposes ongoing communicational processes. These processes need organizational support, platforms. A novel suggestion in the dissertation is that ethical review boards could function as such platforms.

Rather than only reviewing, as ethical review boards normally do, these boards would support an ethical culture of conversation and deliberation about dual-use research.

For more information about this important dissertation, see News from Uppsala University. If you are in Sweden and want to visit the public examination, it takes place in Auditorium Minus, Museum Gustavianum, Uppsala, Saturday, March 23, 2013, at 09:15.

Pär Segerdahl

• Trust in Biobank Research: Meaning and Moral Significance

The dissertation is based on four studies. The first two scrutinize empirical evidence concerning public trust in biobank research. They indicate that people do trust biobank researchers, at least in Sweden.

Such findings might give rise to complacency. The ethical regulatory system obviously works and promotes trust. Biobankers can relax.

The third study, however, is a conceptual investigation showing such a reaction to be mistaken. Trust creates obligations in the person who is being trusted. If a doctor collects samples from patients and suspects that their trust is mistaken in one way or another, the doctor has an obligation to handle that mistaken trust appropriately. (I’ve written about this study on The Ethics Blog.)

Public trust doesn’t merely indicate trustworthiness. It creates a moral demand. The proper response to public trust in biobank researchers, then, is taking increased moral responsibility.

The fourth study strives in the same direction. It critiques prevalent faith that trustworthiness is best quaranteed by an extensive ethical regulatory system (ethical review, guidelines, etc.). The opposite may very well be the case. Such a system may foster moral complacency and failure among researchers to deal with ethical issues that are not addressed by the system.

If I interpret Linus Johnsson right, the current widespread trust in ethical regulatory systems is mistaken, and his dissertation is an attempt to take responsibility for that mistaken trust by intellectually highlighting and critiquing it.

As this brief summary shows, the dissertation is original and presents some very thought-provoking results, empirically and above all conceptually. For more information about the dissertation, see News from Uppsala University.

If you are in Sweden and want to visit the public examination, it takes place in Auditorium Minus, Museum Gustavianum, Uppsala, Saturday, March 9, 2013, at 09:15.

Pär Segerdahl