Fear of the unknown produces ghosts

April 26, 2017

Pär SegerdahlWhat really can start feverish thought activity is facing an unclear threat. We do not really see what it is, so we fill the contours ourselves. At the seminar this week, we discussed what I think was such a case. A woman decided to test if she possibly had calcium deficiency. To her surprise, the doctor informed her that she suffered from a disease, osteoporosis, characterized by increased risk of bone fractures.

She already had experienced the problem. A hug could hurt her ribs and she had broken a shoulder when pushing the car. However, she felt no fear until she was informed that she suffered from a disease that meant increased risk of bone fracture.

I do not mean she had no reason to be worried. However, her worries seem to have become nightmarish.

Presumably, she already understood that she had to be careful in some situations. However, she interpreted the “risk factor” that she was informed about as an invisible threat. It is like a ghost, she says. She began to compare her body with a house where the foundation dissolves; a house which might therefore collapse. She began to experience great danger in every activity.

Many who are diagnosed with osteoporosis do not get fractures. If you get fractures, they do not have to be serious. However, the risk of fractures is greater in this group and if you get a hip fracture, that is a big problem. The woman in the example, however, imagined her “risk factor” as a ghost that constantly haunted her.

I now wonder: Are ethical debates sometimes are about similar ghost images? Most of us do not really know what embryo research is, for example, it seems vaguely uncanny. When we hear about it, we fill the contours: the embryo is a small human. Immediately, the research appears nightmarish and absolute limits must be drawn. Otherwise, we end up on a slippery slope where human life might degenerate, as the woman imagined her body might collapse.

I also wonder: If debates sometimes are about feverishly produced ghost images, how should we handle these ghosts? With information? But it was information that produced the ghosts. With persistent logical counter arguments? But the ghosts are in the feverish reasoning. Should we really continue to fill the contours of these images, as if we corrected bad sketches? Is it not taking ghosts too seriously? Is it not like trying to wake up yourself in a dream?

Everything started with the unclear threat. The rest were dreamlike consequences. We probably need to reflect more cautiously on the original situation where we experienced the first vague threat. Why did we react as did? We need to treat the problem in its more moderate beginning, before it developed its nightmarish dimensions.

This is not to say that we have no reason to be concerned.

Pär Segerdahl

Reventlow, S., Hvas, A. C., Tulinius, C. 2001. “In really great danger.” The concept of risk in general practice. Scandinavian Journal of Primary Health Care 19: 71-75

This post in Swedish

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


What is the risk?

November 2, 2016

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

This post in Swedish

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


Risks are not just about numbers

May 12, 2015

Jessica Nihlén FahlquistOn a daily basis, we are informed about risks. The media tell us that obesity increases the risk of cardiovascular diseases and that we can reduce the risk of Alzheimers by eating the right kind of food. We are confronted with the potential danger of nanoparticles and mobile phone radiation. Not to mention the never ending discussion about nuclear power. Some news are more serious than others, but we cannot avoid risk information as such.

In addition to the media, government agencies inform the public about risks. The Swedish National Food Agency encourages people to eat fish because of its potential to reduce the risk of cardiovascular disease. But we should also reduce the intake of wild-caught salmon and herring due to the health risks associated with mercury.

Contemporary society has been described as a risk society, simply put a society preoccupied with risks. We invest a great amount of our common resources in risk management and communication. Sometimes, it appears as though risks are communicated in a hasty way. As soon as a risk is “found,” it is assumed that the responsibility of the government and possibly of the media is to inform the public. It is not acknowledged that what is considered to be a risk is not always straightforward and value neutral.

Whereas experts define risk as probability multiplied by negative outcome and weigh risks against benefits, several studies have shown that lay people conceive of risk in a much more complex and nuanced way. According to the expert notion, a risk is acceptable if the benefits outweigh the risks. However, individual lay people include other factors, for example, whether risks and benefits are distributed fairly and whether the risk has been taken voluntarily or it is one person exposing another to the risk. Studies in risk perception have also been acknowledged by ethicists and philosophers, who point out that not only do factors like voluntariness and fairness de facto influence people’s notion of the acceptability of risk, but we should care about these values. They are normatively important.

These insights about risk as ethically relevant and value-laden should influence how risks are managed and communicated in society. One example is how government agencies view risks and benefits in the case of infant feeding. Breastfeeding is seen as the best option in terms of risks and benefits. Mothers are expected to breastfeed their babies if they want to do what is best for their baby. Scientific and value-laden statements are mixed in the information provided to new parents. Women, adoptive parents and male gay couples who cannot breastfeed are negatively affected by this message. Women who cannot breastfeed oftentimes feel guilty and think that they are harming their babies for life by not breastfeeding. This should be taken into account when communicating with parents-to-be and new parents. The relationship between government agencies and ordinary people is inevitably unequal and the former should take responsibility for the effects of risk communication.

Another example is the H1N1 virus and the Pandemrix vaccination program in Sweden in 2009. The government informed the public that the vaccine was completely safe and that everybody should get vaccinated for solidarity reasons. After some time, it turned out that a group of teenagers had their lives more or less destroyed because they got narcolepsy probably due to the vaccination. This deserves a thorough ethical discussion.

There are currently signs that some people now hesitate to have their children take part in the regular vaccination program, including protection against, for example, measles. The regular vaccines are much more tested and substantially safer than Pandemrix. The opposition against vaccines are generally based on misconceptions and deficient studies. However, instead of mocking “ignorant” people and thinking that it is possible to change the perception and attitude of anxious parents by informing more about numbers, the anxiety and the lacking trust should be taken seriously. A respectful dialogue is needed.

This does not mean that the opponents of vaccination have the same and as accurate information as proponents of vaccination, who have science on their side. However, risks are not just about numbers!

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Jessica Nihlén Fahlquist

We care about communication - the Ethics Blog

 


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