Multidisciplinarity, genetic risk information and ethics
Genetic risk is complex and difficult to understand. People react differently to genetic risk information. Some want to know everything; others don’t want to know at all. Jennifer Viberg Johansson is working to find out what people who participate in biobank research actually want researchers to do with potential secondary findings about participant’s genetic risk for different conditions.
Jennifer Viberg Johansson is the orthopaedic engineer who took the step from making prosthetics to become a graduate student in bioethics. She spent more than two years teaching students how to design prostatic legs and evaluate the function using biomechanical analyses. She also had an opportunity to develop her ethics interest and taught research methodology and research ethics. A search on CODEX, the Swedish Research Council’s website for rules and guidelines for research, run by CRB, was the first step on her path towards a PhD.
For Jennifer Viberg Johansson it was time to decide between ethics on the one hand, and biomechanics on the other. The choice wasn’t easy, until suddenly she realized that ethics had the ability to combine theoretical aspects with her clinical interest. At CRB, she found an opportunity to start work on a PhD project dealing with return of information regarding incidental or secondary findings in biobank research and now she is more than half way. She recently finished her PhD. Two of the papers in her dissertation collected the arguments for and against giving participants this information and what would happen if we offer them the choice to receive it, or decline. For Jennifer Viberg Johansson, this is not a simple question. Some health related secondary findings in research are uncontroversial to return to participants. For example high blood pressure or blood glucose levels where a doctor’s visit could answer whether there is cause for concern. Secondary findings in genetic research are more complicated. Often, there are no causal connections between a genetic variant and a disease, or no treatments available for that matter.
Biobank research is important. Maximising knowledge by creating good systems for collection and handling of data leads to better care for those that need it. But biobank research is not just about samples. It is also a matter of the participants that contribute their samples. Some of them only want to know their genetic risk if there are preventative measures that can be taken, some want to know everything. But there are also those that only want to donate their samples, and not know anything beyond that.
“It may seem like a simple and attractive solution to allow participants to say yes or no to information on genetic secondary findings, for example when they consent to participate in research. If researchers choose to do this, I think it is very important that it is done in a responsible way, based on knowledge of how people think and reason about genetic risk”, says Jennifer Viberg Johansson.
As part of her PhD, she conducted an empirical study that uses both qualitative and quantitative methods to capture research participants’ preferences when it comes to genetic risk information. Jennifer Viberg Johansson is using Discrete Choice Experiments (DCE) to calculate how they make trade-offs between different aspects of the information and whether there are differences between different groups. The method appeals to her engineering background and she enjoys the mathematical basis for it.
Jennifer Viberg Johansson did clinical work for five years. Meeting patients, she experienced many ethical dilemmas first hand and has thought a lot about priorities in health care. What do we do when a hockey-player enters the clinic through the back-door followed by his physician? Do we treat him before the older woman with sores and diabetes already sitting in the waiting room? For Jennifer Viberg Johansson, just thinking something is wrong is not enough. She wants to find the arguments for and against and that is something she has in common with her colleagues at CRB. She is the only engineer, but shares the clinical background with serval of the other young researchers, most of them medical doctors and nurses. Despite different professions, they have the clinical experience in common and Jennifer Viberg Johansson thinks there is an unspoken understanding of each other’s perspective and a lot of common experiences.
When you meet people in need, you have to be open to what the patient expresses, both directly and indirectly. Jennifer Viberg Johansson believes this is true for research participants too. Information about genetic secondary findings is not always about learning you have a disease. It is often about probabilities. This is complex and difficult to comprehend. But if you simplify information too much, you risk not finding out what people actually think and want. Depending on how you ask questions, you also risk putting words in their mouths.
CRB is a multi-disciplinary research environment and Jennifer Viberg Johansson thinks it enriches her research. The meeting between different methodological approaches to a question helps define concepts, and nuances in concepts. She often finds herself in interesting conceptual discussions at work.
“The very fact that this is a multi-disciplinary group forces me to get to the bottom of what it is I actually mean. If everyone thinks the same, that is not necessary. Here, we have to question to understand each other. Despite that being difficult sometimes, it takes me forward. Both as a person and as a researcher” says Jennifer Viberg Johansson.
Jennifer Viberg Johansson uses autonomy as an example. She thinks it is an interesting and exciting concept and says that the more we discuss it, the more obvious it becomes that we mean different things by it. Or that the concept holds different things. Some think of empowering people to make decisions for example. When you discover that, it becomes possible to see nuances of what autonomy is really about.
About Jennifer Viberg
Jennifer Viberg Johansson holds an MA in Rehabilitation Science from Mid Sweden University. She is a licensed Prosthetist and Orthotist. Before starting her PhD, she was teaching at Jönköping University. She was involved in the IMI-funded BTCure project on Rheumatoid Arthritis, Mind the Risk and BBMRI.se. She finished her PhD in 2018. Currently, she is doing research on sharing health data in cyberspace and collecting patient preferences.
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