Susanne Lundin

Biomedicine at the borders. Ethnography as a model to investigate biomedicine’s moral and legal grey areas and to provide a basis for international actions.

Biomedical technologies are important scientific breakthroughs. While contributing to health and welfare the medical conquests also bring challenges. An increasing problem worldwide is that success of medicine creates a need for biological material and stimulates trading markets where human bodies are valuable resources. There are documented risks that people, seriously ill in search of health or poor in need of money, will be exploited in these bio-trading systems. Eliminating such risks is a considerable public challenge and a necessary task in order to alleviate global human suffering. There is very limited knowledge in health care or within enforcement authorities globally on how trade systems are organized. My ethnographic and interdisciplinary research on medical travel, clinical trials and counterfeit medicine provide unique insights. During the sabbatical I will: Follow the seminars and present my research at the Institute for European Ethnology, Humboldt University, and at Stellenbosch Institute for Advanced Study. Collect follow-up data. Organize a conference session and present results of the sabbatical at UN. Write three articles that link the results of three research fields that provide new knowledge about how to explore the global moral and legal grey areas of biomedicine. Altogether, this generates a basis for recommendations about new practices in health care, in non-governmental and governmental and legislative institutions.
Final report

THE PROJECT’S POINT OF DEPARTURE is that biomedical techniques are scientific breakthroughs that bring welfare, but the successes also entail societal challenges. A global problem is that the biological development creates the need for biological material where human bodies are valuable resources. My research show that people are often abused in these medical gray areas. There is, internationally, limited knowledge in healthcare and in regulators about how the systems are organized and what their consequences are.

THE OVERALL OBJECTIVE OF THE PROJECT has been to develop analysis tools to investigate the gray areas of medicine. The project is based on my research on (A) Medical travel, (B) Medical tests and (B) Falsified medicines. The ambition has also been to provide knowledge to form a basis for recommendations to governmental and legislative institutions within and outside Sweden.

THE MOST IMPORTANT RESULTS OF THE PROJECT indicate that there are overall factors that link my research fields. One factor is that the western world, like a number of other societies around the world, is penetrated by neoliberalist approaches and individualization with ideas of, among other things, personal responsibility and freedom of choice. Another factor is that Internet access has opened a global market where illegal sites offer commodities such as body parts, cells, embryos and drugs. On this market, people will be able to "take responsibility" for and designing their own bodily well-being by purchasing what is otherwise difficult to access. Another factor that links the research fields is that these gray areas are often “invisible”. Commerce with human biological material is forbidden. At the same time, many countries, like Sweden, outsource ethical problems that arise in connection with, for example, the lack of organ transplants and fertility treatments. Thus, people from wealthy countries can buy body parts from people in poorer countries without major legal barriers.

THE PROJECT SHOWS the importance of ethnographically following events in different contexts to unfold processes such as illegal organ purchases, the considerations that occur when individuals are included in medical tests and the processes that affect the spread of falsified medicines (1, 10). The project also shows the importance of collaboration with other sciences to examine my research questions (2). Without access to clinics, laboratories, customs and police authorities and the knowledge of other scientists, my research would have been difficult to conduct (11). Below are two examples of the importance of such cooperation. The first shows how my previous research on medical travelers connects with my recent research on falsified medicines. The second example shows that multidisciplinary cooperation illumines the needs of cultural and social sciences.
Example 1: In Sweden as well as globally there is a need for transplants and medicines for serious diseases. Commerce with such treatments is forbidden. My previous studies illustrate that people who have bought organs in other countries risk returning with defective ones. Through my medical partners in South Africa and pharmacologists in Laos, another picture emerged. Namely, that some patients return with falsified medicines. After a transplant, anti-rejection drugs, e.g. CellCept, are necessary. In its faked version, CellCept is manufactured in China, which, together with India, is one of the major manufacturing and exporting countries for substandard and faked medicines. The faked CellCept is empty of medical substances and thus life threatening. Other false drugs - such as malaria and HIV medicines, Viagra, various pain relievers and opioids - may also be completely empty or have ingredients like lime, flour, paint, amphetamine, etc. (13).
Example 2: Collaboration with researchers in WHO shows that there exists knowledge about falsified medicines in the medical and pharmacological sciences, but that there is almost no humanistic research. The project identified what knowledge is needed and subsequently two pilot studies were carried out in Sweden (12). The first was to find out how the public consume medicines and what is known about falsified medicines (15). Many people had an instrumental approach to the health care system. They turned to health-care to get information about suitable medicines that could then be ordered on-line. Arguments were that the Internet is fast and provides opportunities to tailor-make personal health. Several people participated in chat groups online and gained an impression of other people's medical experiences. There seems to be a shift from faith in doctors and evidence-based medicine to trust in personal and experience-based medical advice. The second pilot study aimed at finding out if physicians met patients who suffered from unknown side effects after purchasing online or abroad (12). Both studies showed that there was no knowledge of falsified medicines. WHO and Interpol estimate that 10% of medicines worldwide are false, of which approximately 50% in poor countries and about 1% in wealthy countries such as Sweden. My ongoing studies in South Africa, point out that in less-wealthy countries the spread appears to occur in local markets or through acquaintances. In northern Europe, for example in Sweden, the Internet is the most common platform. This pattern has great similarities with medical travel. Even there, the Internet is an important source of information for potential organ or stem cell buyers (2, 3).
RECOMMENDATIONS. In addition to analyses, the project has aimed at investigating possibilities for implementation in order to provide basis for recommendations to government and legislative institutions within and outside Sweden. Results have been presented to the academy and to organizations such as: The Royal Academy of Sciences, the Swedish Medicines Agency, The National Board of Forensic Medicine, The Swedish Society of Medicine the WHO, the European Commission, the Declaration of Istanbul and The Transplantation Society.

NEW RESEARCH QUESTIONS. The study on medical travel and transplantation showed that almost no ethnic Swedes purchased transplants abroad. However, people who reside in Sweden but originate from countries where healthcare is provided through bribery, purchased organs abroad. It was primarily the experiences of how healthcare works that governed their strategies to look for treatment abroad rather than through the Swedish waiting list for transplantation. Sweden has relatively little knowledge of how people of other ethnic backgrounds relate to body and medicine. The new research question I am interested in takes its starting point in today's Swedish society. I ask how people's experiences of healthcare affect the view of health and medicine. My assumption is that both the Internet access and the multicultural situation prevailing in today's society mean that medical travel increases as well as the spread of clinically unproven and falsified medicines.
NEW COOPERATIONS that have started are with The WorldWide Antimalarial Resistance Network, The Institute of Tropical Medicine in Antwerp, Karolinska Institutet, African Institute of Biomedical Science and Technology in Zimbabwe, Wits Institute for Social and Economic Research, Johannesburg, London School of Hygiene & Tropical Medicine, VA – Public & Sciences https://va.se/ and Uppsala Monitoring Center. The latter involves collaboration regarding a PhD-project with a focus on falsified medicines. Funding through the LMK Foundation.
Previously established as well as new collaborations with researchers and organizations have given opportunities to initiate fieldwork in South African townships to gain knowledge about medical habits. The Stellenbosch Institute for Advanced Study, STIAS, in South Africa has offered me to organize a multidisciplinary research group on falsified medicines for 2018-2020. The group works for two months / year at the institute.

CONFERENCES, SELECTION
•    STIAS, 2015-03-17 “Future Bodies. Preventing organ trafficking - focusing on consequences and alternatives to organ shortage”, Lundin & Muller
•    The Wits Institute for Social and Economic Research, Johannesburg 2015-03-19. “Organs for sale. An ethnographic study of the global organ trade”
•    University of Bergen, 2015-05-04, Encounters between Nordic health, welfare and the global: Challenges and possibilities, “Bodies in grey zones: An ethnographic study of the global organ trade”
•    STIAS, 2015-05-12, “Global Bodies. Health, Hope & Biotechnology”
•    Humboldt Universität, Berlin, 2015-11-24, Biomedicine at the borders.  Ethnography as a model to investigate biomedicine’s moral and legal grey areas and to provide a basis for international actions.
•    Karolinska Institutet, 2016-09-30, ”Kroppen som vara. En etnologisk undersökning av den globala organhandeln”
•    London School of Hygiene & Tropical Medicine, 2015-06-22, “Medical Travel”
•    Statens medicin-etiska råd, 2016-09-19, “Fake medicines. What the public knows and what doctors say”
•    STIAS, 2016-11-22, “Health in Transition” Lundin, Muller & Kristiansson
•    Lunds universitet, Grey Zone Ethnography, 2016-12-16, Lundin & Liu. ”The trade with cells, organs and medicines”
•    Svenska Läkarsällskapet, 2017-02-09, “Medicin i moraliska och legala gråzoner”
•    Lunds universitet, Africa Day, 2017-03-01, “Medicines on the move. Health, hope and decision strategies in global settings”

PUBLIC OUTREACH. I have participated in a large number of radio programs, interviews on television, daily press and held popular science lectures.

Grant administrator
Lunds universitet
Reference number
SAB15-0302:1
Amount
SEK 1,460,000
Funding
RJ Sabbatical
Subject
Ethnology
Year
2015