ADI Academic Profiles - Ayo Wahlberg
By Kasper Ørntoft Thor, Asian Dynamics Initiative
ADI Academic Profiles series puts spotlight on individual researchers working on Asia related issues in the social sciences and humanities, and promotes remarkable publications and innovative research projects.
Ayo Wahlberg, Associate Professor at the Department of Anthropology, has received an impressive 11 mio. DKK research grant from the European Research Council for a 5 year research project entitled 'The Vitality of Disease - Quality of Life in the Making'.
During the course of the last 100 years, a biological revolution has taken place within the field of medicine, resulting in spectacular advances in prolonging the life of people around the world. As a result, in today's world more and more people are living with their diseases in their everyday lives, and so the focus of health care is shifting: from trying to prolong and save lives to improving the quality of life of patients and their carers. With a Starting Grant from the European Research Council, Ayo Wahlberg of the Department of Anthropology is now embarking on a research project to study this very issue. His previous research as a PhD candidate at the London School of Economics and as an ADI postdoctoral fellow in Copenhagen has had him engaged with herbal medicine in Vietnam as well as reproductive technologies at a Chinese infertility clinic.
"I have always had a medical focus having worked on both infertility and traditional herbal medicine in Vietnam and China. What has been common to these projects is the notion of quality of life. Herbal medicine is promoted as a way to enhance quality of life, while infertility is seen to impact on a couple’s quality of life. Infertility is a disease that in the majority of cases is in no way life threatening, but couples still suffer a lot from not being able to have a child. And although the medical treatment may be biological, the purpose is to raise the quality of life of the couple. The involuntarily childless couples I have spoken to have stressed that without a child, their lives will be difficult. In China, existential desires are often linked to economic circumstances, since having a child is also seen as a way to make sure that you have someone to take care of you when you get older. It is this concept of quality of life that I have now brought with me into my new project."
'The Vitality of Disease - Quality of Life in the Making'
Ayo's new project entitled 'The Vitality of Disease - Quality of Life in the Making', or VITAL for short, has a global scope and will consist of four projects, each dealing with separate parts or aspects of human life, that is, birth, families with children that have chronic diseases, lifestyle diseases among adults and degenerative diseases. Having previously done research on Chinese IVF (in vitro fertilization) clinics, Ayo will focus on the aspect of reproductive genetics, through a Sino-Danish collaboration.
So how is the concept of quality of life represented in your new project?
"This new project is going to shed light on the ways in which people are guided and taught to live with their diseases in the best possible way through counselling, patient schools or patient guides. My specific project focuses on reproductive genetics. I want to look at how families with a known genetic disease seek and receive counselling in matters of reproduction, as a way to help them avoid transmitting a disease to their future children. Quality of life is a key consideration in this respect, because the future quality of life of the child as well as that of the family are often at the heart of reproductive decision-making.”
What are you hoping will be the future implications of the project?
"During the past 100 years there has been a revolution within the field of medicine and spectacular advances in prolonging life, even if this of course remains an urgent priority in these times of Ebola and grave global health inequalities. These advances have in large part been due to biomedical research. But if you want to improve quality of life, you must rely on another kind of expertise, namely qualitative health research - you have to interview people and ask them how they feel. This is exactly what anthropologists (and others) have been doing for decades, and the knowledge that results is in many ways already present in today's health care practices. We just don’t know much about how this knowledge circulates. What I want to do is show exactly how knowledge resulting from qualitative health research is spilling over into health care practices and vice versa. Through the project I aim to explore how qualitative health insights have been acknowledged and incorporated to such an extent that it now sits alongside biological health research in hospitals, clinics and homes. As such a longer term goal is to rethink the ways in which qualitative expertise in our health care can work alongside biological expertise."
Do you think your current research will be a stepping stone to further research projects in the future?
"I think so, yes. The nice thing about ERC grants is that they encourage scholars to propose high-risk projects that go beyond the existing knowledge base. Some people would call this project ‘blue skies research’, but I think it has more to do with exploring frontiers, pushing boundaries. In my application I was very open: 'Maybe after five years I won't be able to show a link between qualitative research and medical practices. I don't know, because I haven't done the research yet.' Having said that, I am of course confident and I believe that it is exactly this kind of research that will allow us to rethink health care practices in a time where more and more people throughout the world live with disease for months, years, if not decades."
ADI would like to thank Ayo Wahlberg for featuring in this interview.
The four VITAL ethnographies
Genetic counselling – an ethnography of how families with a known genetic disease negotiate their reproductive futures through genetic counselling. The study will focus on the ways in which information about the future quality of life of a child as well as his/her family are negotiated by prospective parents
Learning to live with disease – an ethnography of how patients and families living with a chronic disease are guided to live the best possible lives with their disease as a means to improve their health and wellbeing. The study will focus on the concrete practices that are recommended and taught through patient training programmes and patient schools.
Clinical trials – the development of rating scales and indices to measure health-related quality of life has become a crucial component of medical research today. Since treatments are not only used to lengthen life, researchers must be able to measure improvements in the way a patient experiences or lives with a disease. This study will examine how notions of ‘improved living’ circulate among researchers and trial participants.
Patient associations – many of those living with disease go on to found disease advocacy organisations which provide support and advice to patients and their carers. This ethnographic study will examine how advocacy groups that have formed around Alzheimer’s disease contribute to the generation of knowledge about the challenges of daily life with dementia and the quality of life of patients and carers.