Celia Fisher, Ph.D., the Marie Ward Doty University Chair, professor of psychology and director of Fordham’s Center for Ethics Education, has spent much of her 30-year career developing and integrating ethical practices into academic research. She is a nationally recognized expert who has chaired research ethics committees for the Department of Health and Human Services and for the Environmental Protection Agency.
Arriving at Fordham in 1979 as an assistant professor with an interest in child and adolescent research, Fisher broadened her expertise to include protecting the rights and welfare of research participants and patients, with a special emphasis on underrepresented groups. She is the founding editor of Applied Developmental Science and the author of more than 100 theoretical and empirical publications on human development and ethics in medical and social science and practice. She is the recipient of numerous federal grants supporting her work.
You are doing research on ethical challenges inherent in studies that use community research workers. Why is there a need for this?
In the past few years, I’ve focused a lot on the ethics of research involving homeless and socially marginalized street drug-users. In interacting with these populations, I realized that as hard as we try as lead investigators to use our own moral compasses to conduct research responsibly, we are not in the same world as those we study or even those research workers we hire to collect data.
In addition, investigators often hire individuals with previous drug use histories and ties to the community to help us recruit participants for these studies. As a consequence, investigators often have no understanding or experience with the real ethical challenges that emerge in the field.
Do the research workers know the community better than the principal researcher?
Yes. They are typically selected because they share features with the drug users they are studying. They may be former addicts, or live in the same community. There can be a lot of stress placed on these people.
For example, in every study, we have inclusion/exclusion criteria, i.e. you have to be a heroin addict for this study; you can’t be a cocaine user. Or, to be considered a heroin addict you must have used in the last week. Research workers often find that these categories don’t fit the real lives of heroin addicts. They tell us that drug use is largely dependent on what is available, and how much money addicts have at any moment in time. So some heroin and injection-drug users may not have used in the last week because they had no money or supply.
This puts pressure on the field workers to “fudge” a bit, because they believe the person is a heroin user and that our criteria are ridiculous. So if investigators are unaware of the challenges facing front-line workers, they may be using data that is not truly representative of the problem they think they are studying.
How did you become interested in research ethics protecting the vulnerable?
I was a developmental psychologist studying children, and then I had my own children. All of a sudden, I was looking at child research in a very different way. It began to resonate how the children and their parents might be affected by the research as participants, and as members of a group that might be helped or stigmatized by results.
Research must reflect the values and merits of those we are studying. We must understand what their perspectives are, and those perspectives must inform how we work. Otherwise, we could be harming them in ways we don’t realize.
What is the history of ethics in research?
Ethics is defined within a socio-political context, so we didn’t really have research ethics until after World War II and the Nuremberg Trials. Medical ethics, before that time, had been the Hippocratic oath, which basically was, the physician should do no harm.
The Nazi medical research atrocities and infamous U.S. Tuskegee syphilis study and other research violations of basic human rights resulted in 1979 in federal regulations protecting all research participants, with a special emphasis on vulnerable populations such as prisoners and children.
But globalization has brought to the fore ethical issues that we had thought we had solved. Today, we are working more with poor countries with diverse populations and different cultural attitudes.
How do we ensure that differences in language and culture do not interfere with the ability of participants in developing countries to provide informed, rational and voluntary consent? For example, do these individuals understand that a “placebo” is not a treatment? In countries with gender inequities, is it ethical to accept local norms that require a man to consent to his wife’s participation?
I have developed a theory called ‘goodness of fit ethics.’ It means that vulnerability of a participant isnot simply a characteristic of the participant, but is actually created by the investigator’s choice of methodology and participant protections. These choices can either make participants more or less vulnerable to research harms and more or less likely to benefit from the research.
What is the greatest ethical issue in the 21st century?
The big ethical question of the 21st century is, ‘How do you distribute the world’s limited resources?’ As we get more global and more economically polarized in the U.S., what is a fair distribution of health resources, of research benefits and burdens, or other precious resources? We are really going to have to figure it out.
For example, imagine you are testing an experimental HIV vaccine in a population that is at high risk for the virus (i.e. women in resource-poor countries or whose sexual partners are injection drug users). By definition, the vaccine is being tested because researchers do not know whether it will work. What if someone in the study gets HIV? Are you responsible for providing them with services to treat it? If they misunderstood the experimental nature of the vaccine, are we responsible in part for their acquiring HIV? I believe that these issues are going to shift the definition of what research is.
In what way?
In the past, the researcher was simply there to generate data that would be used by others. But increasingly, vulnerable populations are looking at involvement in research as a way to benefit their own communities. This places the researcher in what I and some others have called the ‘scientist-citizen dilemma.’ What is the extent to which scientists can simply be observers and generators of data without providing assistance and giving back to the communities they are researching?
What is planned at the Center for Ethics Education?
On April 12, we will offer “Moral Outrage and Moral Repair: Reflections on America’s Response to 9/11.” The conference deals with questions with which our society is grappling: How do we protect ourselves from terror attacks while preserving the moral integrity of our society? What is the role of religion in certain terrorist acts and how can religion offer pathways to redress that build upon our common humanity?
Why has the center begun to offer a multidisciplinary master’s degree in ethics and society?
People are finding that the moral choices we make in our personal, professional and community lives have become more global and more complex.
We are confronting new terrains of personal and social responsibility. We can see it in choices we will make for future generations regarding climate change; we can see it in privacy issues and changes in the meaning of community raised by the Internet; and we can see it in issues of corporate responsibility in today’s global economy.
Our new master’s program is very popular because new and seasoned professionals are thirsty for a program that enables them to draw upon multiple disciplinary perspectives to increase their understanding and contribution to the moral issues of our time.
– Janet Sassi