International research ethics program of the Fogarty International Center

© 2011 S. Loue, A.S. Kurlenkova

A.S.Kurlenkova interviews S.Loue

 

Information:

Sana Loue (M.S.S.A. Social Work, Ph.D. Anthropology, Ph.D. Epidemiology, M.PH. Epidemiology, J.D. Law, Ph.D. Medicine) is Professor in the Department of Epidemiology and Biostatistics and Department of Bioethics at Case Western Reserve University. Dr. Loue is also the Director of Center for Minority Public Health. Her primary research focus is on HIV risk and prevention and family violence in marginalized communities, such as non-English speakers, immigrants, sexual and ethnic/racial minorities, and persons with severe mental illness. Other research interests include forensic epidemiology, severe mental illness, and ethical issues in the conduct of research with vulnerable persons.

Dr. Loue has authored over 70 peer-reviewed articles, and has authored and/or edited 27 books, including “Case Studies in Ethics and HIV Research” (in collaboration with Pike E.), “Forensic Epidemiology: Integrating Epidemiology and Law Enforcement”, “Case Studies in Forensic Epidemiology”, “Assessing Race, Ethnicity and Gender in Health”, “The Transformative Power of Metaphor in Therapy” and others1.

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Key words: international research ethics, ethical and legal issues, Fogarty International Center, HIV risk behaviors

Abstract: During the interview Sana Loue tells about her academic career in medical anthropology,  describes the situation with the medical anthropology education in the USA, in particular at Case Western Reserve University, talking more in details about the Fogarty program, which allows international students to get a grant for medical anthropology studies.

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AK: Sana, tell us, please, about your background, education     and the way you came to bioethics and research ethics.

SL: Ok. I actually came to bioethics and research ethics from law. So my original training was as a social worker, and then I practiced law for 14 years. While I was practicing Immigration Law, more and more of my clients presented with health problems that affected their immigration status, but their illegal status affected their ability to get the health care. So, that is when I went on for a PhD in Epidemiology, and then switched from using epidemiology in law to using law in epidemiology. And when I came to Case (Case Western Reserve University) my primary appointment was in Epidemiology and Biostatistics and my secondary appointment in Bioethics. So my perspective in bioethics is really informed by my experiences as a social worker, as a lawyer, and now as a scientist both in terms of quantitative and qualitative research.

A.K.: So while working with foreigners you noticed that there are certain issues regarding their health status that have ethical component in them?

S.L.: As a lawyer – no. The issues as a lawyer really had more to do with… For instance, when I handled cases of clients with AIDS – all kinds of issues around confidentiality came out. And these were legal issues, as well as ethical issues. So, to give you an example I had one client who was HIV-positive, and at that time and even now individuals who have access to medical records as a part of their medical care are not supposed to give that information to other people without the patient’s consent. What happened with that client is that he went to see a doctor at a particular clinic, and the doctor wrote on the information for the person in charge of the billing that the person had HIV. Instead of writing a medical code he actually wrote down about the guy’s HIV. Well, the billing clerk happened to recognize the patient’s name, because he was a tenant in the apartment house that was owned by one of her relatives. And she told her relative, and the relative evicted him. So he became homeless. That’s an example – not in the context of science, but where there is a clear violation of medical ethics, and there is violation of the law. There are other issues that come up in my research with individuals from other cultures that are ethical issues and legal issues. For example, if someone doesn’t understand that something is a study as opposed to medical care; if it is presented in a language that a person does not understand – these are both ethical and legal issues.

A.K.: As far as you know, tell us, please, about how bioethics is established in the US system of education.

S.L.: Many of the people who actually work in the field of bioethics come to it from very different backgrounds. So many people were not trained specifically in bioethics, they may have been trained in medicine, or in anthropology, or in law, or philosophy which actually makes bioethics a very rich discipline. It utilizes perspectives from different domains of study which I think is really important – and it’s really necessary given the complexity of issues, and the diversity of perspectives in any particular situation.

A.K.: When you joined Case, was the Department of Bioethics already established?

S.L.: Actually, when I joined Case in 1994, Bioethics was not a department, it was a center. It became a full department I think several years later. But initially it was established as a center which has a lesser status in some ways than a department.

A.K.: Ok. So I’m a participant of the Fogarty fellowship, and I would like to ask you how you came up with the idea of starting this program.

S.L.: The program was started by the Fogarty International Center. I think the first year they started funding it was around 2000 (give or take a year). And the way I became interested in applying – in about may be 1996-1997 a colleague had invited me to collaborate on some research he was doing in Romania. And his field of expertise is international adoption and working with children. He was interested in looking at HIV risk behaviors among street children. Since I do research around HIV risks he asked me to collaborate. So I went over there with him and with some students to conduct this research. The following year we also conducted research looking at what pregnant women in some clinics knew about HIV, what their risk behaviors were. In the process I met a number of physicians who were very concerned about the state of ethics training among medical school students. I applied for a Fulbright that would allow me to teach and do research in Romania. And I was awarded the Fulbright, and so spent four months one year and I think two months the following year teaching research ethics and some methodology courses. It was about that time or shortly after that that the Fogarty International Center issued a request for applications for a training program in bioethics, and specifically in international research ethics. So, together with some people I have met in Romania – and we also had very good relations with colleagues in Nigeria, Uganda and Saint Petersburg – we applied for our initial training program.

A.K.: And the Fogarty International Center is a part of NIH, right?

S.L.: Right.

A.K.: Ok. So, it’s been already ten years since the program started, and every year you have around 4 students, right?

S.L.: Somewhere between 2 and 4. The first six years of the program it was a collaboration between Russia, Romania, Nigeria and Uganda, and we tried to have one trainee from each country each year. Some years it didn’t work, because a particular country didn’t send someone. The last four years it’s been in conjunction with Romania and Russia, and then two years ago we added Tajikistan.

A.K.: Do you have any feedback from Fogarty alumni?

S.L.: Sometimes.

A.K.: Did some of them find a way to keep on going in this direction in their countries?

S.L.: Actually, most of them have, either full-time or part-time. And some of them have said that it completely changed their lives. So, some of them teach bioethics, some of them do writing, some of them are on ethical review committees, some of them are on international review committees.

A.K.: Could you give a couple of interesting examples of how people implemented their knowledge?

S.L.: Sure, sure. One of our trainees from Nigeria who was a physician and very interested in medical humanities actually wrote a play that dealt with some ethical issues. And it was published, it was performed, and it won an award in Nigeria. So, that was very exciting. One of our other trainees, actually several of our trainees, teach bioethics on a regular basis. At least two of them review research proposals for the European Union, and also sit on some of the international ethics committees in Europe as members. A couple of our trainees have also become members of the editorial board of a journal specifically devoted to bioethics. Some of them have authored chapters and entries for books and encyclopedias in addition to writing journal articles. So, it’s a very exciting stuff.

A.K.: Ok, Sana. I hope I’ll also manage to do something valuable with the knowledge I got through the program. Thank you for the interview.

S.L.: You are very welcome.

Notes

  1. Information is retrieved from http://epbiwww.case.edu/index.php/people/faculty/62-loue

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