The Ethics Blog

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

Month: November 2016

The apparent academy

29 November, 2016 / / 0 Comments

Pär SegerdahlWhat can we believe in? The question acquires new urgency when the IT revolution makes it easier to spread information through channels that obey other laws than those hitherto characterizing journalism and academic publishing.

The free flow of information online requires a critical stance. That critical stance, however, requires a certain division of labor. It requires access to reliable sources: knowledge institutions like the academy and probing institutions like journalism.

But what happens to the trustworthiness of these institutions if they drown in the sea of impressively designed websites? What if IT entrepreneurs start what appear to be academic journals, but publish manuscripts without serious peer review as long as the researchers are paying for the service?

This false (or apparent) academy is already here. In fact, just as I write this, I get by email an offer from one of these new actors. The email begins, “Hello Professor,” and then promises unlikely quick review of manuscripts and friendly, responsive staff.

What can we do? Countermeasures are needed if what we call critical reflection and knowledge should retain their meaning, rather than serve as masks for something utterly different.

One action was taken on The Ethics Blog. Stefan Eriksson and Gert Helgesson published a post where they tried to make researchers more aware of the false academy. Apart from discussing the phenomenon, they listed deceptive academic journals to which unsuspecting bioethicists may submit papers (deceived by appearances). They also listed journals that take academic publishing seriously. The lists will be updated annually.

In an article in Medicine, Health Care and Philosophy (published by Springer), Eriksson and Helgesson deepen their examination of the false academy. Several committed researchers have studied the phenomenon and the article describes and discusses what we know about these questionable activities. It also proposes a list of characteristics of problematic journals, like unspecified editorial board, non-academic advertisement on the website, and spamming researchers with offers to submit manuscripts (like the email I received).

Another worrying trend, discussed in the article, is that even some traditional publishers begin to embrace some of the apparent academy’s practices (for they are profitable). Such as publishing limited editions of very expensive anthologies (which libraries must buy), or issuing journals that appear to be peer reviewed medical journals, but which (secretly) are sponsored by drug companies.

The article concludes with tentative suggestions on countermeasures, ranging from the formation of committees that keep track of these actors to stricter legislation and development of software that quickly identifies questionable publications in researchers’ publication lists.

The Internet is not just a fast information channel, but also a place where digital appearance gets followers and becomes social reality.

Pär Segerdahl

Eriksson, S. & Helgesson, G. 2016. “The false academy: predatory publishing in science and bioethics.” Medicine, Health Care and Philosophy, DOI 10.1007/s11019-016-9740-3

This post in Swedish

Approaching future issues - the Ethics Blog

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The brain develops in interaction with culture

16 November, 2016 / / 0 Comments

Pär SegerdahlThe brain develops dramatically during childhood. These neural changes occur in the child’s interaction with its environment. The brain becomes a brain that functions in the culture in which it develops. If a child is mistreated, if it is deprived of important forms of interaction, like language and care, the brain is deprived of its opportunities to develop. This can result in permanent damages.

The fact that the brain develops in interaction with culture and becomes a brain that functions in culture, raises the question if we can change the brain by changing the culture it interacts with during childhood. Can we, on the basis of neuroscientific knowledge, plan neural development culturally? Can we shape our own humanity?

In an article in EMBO reports, Kathinka Evers and Jean-Pierre Changeux discuss this neuro-cultural outlook, where brain and culture are seen as co-existing in continual interplay. They emphasize that our societies shape our brains, while our brains shape our societies. Then they discuss the possibilities this opens up for ethics.

The question in the article is whether knowledge about the dynamic interplay between co-existing brains-and-cultures can be used “proactively” to create environments that shape children’s brains and make them, for example, less violent. Environments in which they become humans with ethical norms and response patterns that better meet today’s challenges.

Similar projects have been implemented in school systems, but here the idea is to plan them on the basis of knowledge about the dynamic brain. But also on the basis of societal decision-making about which ethics that should be supported; about which values that are essential for life on this planet.

Personally I’m attracted by “co-existence thinking” as such, which I believe applies to many phenomena. For not only the brain develops in interaction with culture. So does plant and animal life, as well as climate – which in turn will shape human life.

Maybe it is such thinking we need: an ethics of co-existence. Co-existence thinking gives us responsibilities: through awareness of a mistreated nature; through awareness of our dependence on this nature. But such thinking also transcends what we otherwise could have imagined, by introducing the idea of possibilities emerging from the interplay.

Do not believe preachers of necessity. It could have been different. It can become different.

Pär Segerdahl

Evers, K. & Changeux, J-P. 2016. “Proactive epigenesis and ethical innovation: A neuronal hypothesis for the genesis of ethical rules.” EMBO reports 17: 1361-1364.

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Approaching future issues - the Ethics Blog

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What is the risk?

2 November, 2016 / / 0 Comments

Pär SegerdahlTo communicate about genetic risk with patients, we need to know how people think about risk and that experts and people in general often think differently.

A common feature, however, is this: Risk has to do with future adverse events. We talk about the risk of getting sick. But we rarely talk about the risk of getting well. We must then imagine people who value their disease (perhaps to avoid enrollment in an occupation army).

The expert’s concept of risk presupposes the negative value, but does not delve into it. It focuses on the probability that the unwanted event will happen (and how certain/uncertain the probability is).

For patients, however, the value aspect probably is more in focus. A couple learning about a 25% risk of having a child with a certain disability probably considers how bad such impairment would be: for the child and themselves. Maybe it isn’t so bad? Perhaps there is no great “risk” at all! They evaluate the risk scenario rather than calculate the probability.

How can we understand this value aspect, which risk presupposes and patients ponder? Ulrik Kihlbom at CRB asks the question in an article in the Journal of Risk Research.

Kihlbom describes two common ways of understanding value. The first is in terms of preferences. People have different preferences. Most prefer health before sickness, but occasionally someone may prefer disease. Value lies in satisfying these preferences, whatever they are. There is then only one value: preference satisfaction. The problem is that we can object that these preferences are not always reasonable or well informed. Additionally, patients can adapt to their illness and prefer their lives as much as healthy persons prefer their lives. Is it valuable to satisfy even such preferences?

Not surprisingly, the other way of understanding value is more objective. Here one assumes that value depends on how well certain basic human capabilities are supported. Such as being able to use one’s senses, imagine, think, play, be healthy, etc. Here there is a more objective measure of value. The problem is the authority the measure is given. May not a person lack some of these capabilities and still live a full and dignified life? Who decides which capabilities should belong to the measure?

Actually, I would say that both proposals impose a measure of value. Preference satisfaction is, of course, a general measure too.

Kihlbom proposes a third way of understanding value. No measure of value is imposed and value is not separated from that which has value. If someone gets cancer, the negative value lies already in the disease, so to speak. A person who knows what cancer is does not ask: “Why is it bad to get cancer?” And hardly anybody would answer: “Because it frustrates my preferences” or “Because it prevents me from flourishing as a human being.”

Knowing what disease is means knowing that it is bad. It is part of the point of the word. To exclaim, “I’m so sick!” is to complain (not to rejoice). The value lies in the phenomenon itself and in the word. If some people still value their disease (perhaps to avoid military service), the value lies in the situation where the disease can appear as a good thing.

This is probably how people approach genetic risk information: What does this mean in my life? How bad is it? They immerse themselves in the value aspect, which the numerical probability presupposes. The 25-percent risk of having a child with a certain disability leads to concerns over what such a life might turn out to be like; how it can be described; how it can be valued.

So what should we keep in mind in genetic risk communication? The novelty about genetic risk information is not only that patients get difficult to interpret percentages of probability. The scenarios are new. These scenarios can involve time perspectives that extend throughout one’s future life, even to future generations. They can be about diseases and treatments that we do not know what it means to live with.

We evaluate risks daily (like the risk of missing the train), but here patients encounter novel risk scenarios that are difficult to evaluate. If I understand Kihlbom right, he thinks that the challenge is not only to explain probabilities to patients. The challenge is not least that of talking with patients about these new risk scenarios: about how they react to them in terms of value, how they describe them as “catastrophic” or “not so bad.”

Patients need support to evaluate genetic risk scenarios reasonably; not only to understand probabilities.

Pär Segerdahl

Kihlbom, U. 2016. “Genetic Risk and Value.” Journal of Risk Research, DOI: 10.1080 / 13669877.2016.1200653

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