How do people live with genetic risk?

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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