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

 


How do people live with genetic risk?

December 3, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogFor the doctor, the patient’s disease is a virus infection, a non-functioning kidney, a mutation. The disease is a disorder within the patient’s body.

But for the patient, the disease is not least a disorder of his or her life and of how the body functions in daily life. The disease disrupts the patient’s plans and direction of life. This can be experienced with grief as a loss of what was “one’s life.”

The concept of disease is ambiguous. It has one meaning in medicine; another in the patient’s own life and experience. Also the diseased body is ambiguous. The doctor’s conception of the patient’s bodily disorder is something else than the patient’s experience of the disorder of the body.

At one of our seminars, Serena Oliveri (see below) discussed how people experience genetic risk of disease.

Also genetic risk is ambiguous I believe Oliveri wants to say. Genetic risk has one meaning in genetics (hard to grasp even for geneticists and physicians). But what happens in people’s own lives when they get to know the risk? How does one live with the risk of developing breast cancer or Alzheimer’s disease in the future? How does one live as “someone who is at risk?”

Oliveri indicates that the challenge here isn’t only that of informing people in more comprehensible ways. No matter how well the doctor explains the disease or the genetic risk to the patient, disease and genetic risk continue to be ambiguous. Disease and genetic risk continue to have different meanings in the medical setting and in people’s own lives.

The ambiguity is inevitable. For we do not cease to live and to experience life just because some medical or genetic issue was explained to us in very comprehensible ways. So how does life change when it becomes a life with genetic risk? That question needs to be investigated.

The ambiguity is a responsibility. Today, it is becoming increasingly easy and cheap to provide people with genetic risk information. You can even buy your own genetic test online! That aspect of genetics develops more rapidly today than the methods of treating or giving advice to people at risk.

Through genetic tests, then, it has become very easy to create people who “live at risk” without us really knowing yet what it means in those people’s lives. And without us really knowing yet what they should do with the risk in the form of treatments or changes in lifestyle.

We are dealing with ambiguous concepts, Oliveri points out, and therefore we face double challenges.

Pär Segerdahl

  • Serena Oliveri, PhD, is a Post-Doc researcher in Cognitive Psychology and Decision-Making processes at the University of Milan and a member of the Applied Research Unit for Cognitive and Psychological Science at the European Institute of Oncology (IEO). Her research interests focus on medical decision making, risk analysis related to genetic information, effects on cognitive functions of cancer treatments and cognitive enhancement. She is author of several scientific papers published on indexed peer-reviewed international journals. She participates in the project “Mind the risk” at CRB, which among other issues investigated the questions in this post.

In dialogue with patients


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