Living with Genetic Risk
Prospective genetic sequencing in the clinic involves communication of complex risk information and advice to patients and to the general population. The risk situation is further variable due not only to genetic and epigenetic factors, but also in some cases due to modifiable risk factors related to life style. Risk perceptions of patients and relatives are influenced by differences with regard to numeric probabilities, family history, perceived etiology, population risk and perceived severity of the nature and magnitude of outcome. In some cases treatment or prevention may be available while in other instances risk information is supposed to guide life-planning decisions on reproduction or be beneficial by providing a diagnosis and a sense of control. The ethical challenges associated with communication of information to patients and to the general population are significant.
Interpretation of risk language as well as risk perception is variable and in order for clinicians and the public health system to engage in meaningful shared decision-making more knowledge is needed about individuals’ perceptions as well as on how to apply different models of risk communication and informed consent that respect autonomy. Risk communication in the clinic has been criticized for leaving the patient alone with difficult assessments and decisions to make. In addition, risk communication to the public has shown little or moderate effects, e. g. skin cancer prevention and prevention of sexually transmitted disease (STD). Models for shared decision-making and supportive risk communication need to be elaborated, both in the clinic and when it comes to preventive efforts in the general population.
During my Göttingen visit I will explore the question as to whether new conceptualizations of risk information, e.g. the Tolerability of Risk Approach and the use of Conjoint Analysis Methodologies, can be applied to and respond to some of the ethical challenges related to the communication of genetic risk information.
Hansson, M. G. 2008. The Private Sphere. An emotional territory and its agent. Dordrecht: Springer Science + Business Media B.V.
Hansson, M. G. 2010. Do we need a wider view of autonomy in epidemiological research? British Medical Journal 340:c.2335, pp. 1172-1174.