Genetic risk – how should it be communicated?
Last autumn the Centre for Research Ethics and Bioethics received a grant of SEK 36 million for an international research project, which has the working title “Mind the risk”. The project will involve a multidisciplinary research team examining the ethical aspects of genetic testing.
Using today's technology, human DNA can be collected and mapped to a very large extent. Vast amounts of money are being invested in genome studies and surveys of biomarkers to give information about disease processes, but also on how we respond to different types of medical treatment.
‘You build up large knowledge bases, and with the help of technology produce more information than perhaps we are equipped to handle. Researchers do not always think about how they should communicate the information,’ says Mats G. Hansson, Professor of Biomedical Ethics and director of the Centre for Research Ethics & Bioethics at Uppsala University.
One example of the problems we faced is if a sample that we left at a biobank is found to indicate that we carry a genetic marker, which, depending on a number of factors, could result in cancer. How do we want the doctor or researcher to act in this case?
If when leaving normal samples at the doctor it is revealed that we carry genetic information that can cause cancer, we would probably be informed of the test result so that we can prevent or cure the disease. Yet if the result is only an indication, depending on a variety of interacting factors, it is no longer obvious that we want to know what’s going on, or that we understand the information we receive.
‘Risk information after a genetic test can both give false positive and false negative results. Frequently we do not see the whole picture, and cannot take on-board all the information. It has also been shown that these types of tests can affect the treatment when the patient starts to meddle with their own medications based on the results,’ says Mats G Hansson.
In principle there is no research into genetic risk and how it should be communicated to the individual, and it was here that the idea for Mind the Risk project was born. The working group includes researchers from a variety of disciplines: psychologists, philosophers, health economists and clinics. Together, during the first two years, they will work with concepts such as genetic information and risk.
‘We intended to look at how patients have understood and reacted to this type of information. We also hope to develop a new method that takes into account how our decision-making appears. The ultimate goal is to develop concrete tools for both those who deliver and those who receive risk information,’ says Mats G Hansson.
Josefin Svensson