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US to investigate impact of stigma on health

Charles Marwick Washington

BMJ 2001;323:592 ( 15 September )

News extra

The US is planning an ambitious programme of research into the impact of stigma on human health, led by part of the National Institutes of Health in Bethesda, Maryland.

It faces a problem, however, in deciding which research methods to use to determine the precise impact of stigma, a recent conference heard.

The three day conference in Washington attended by investigators from many parts of the world, looked at the relation between stigma and public health, the social and cultural aspects of stigma, and the ways it prevents people from seeking or receiving treatment for disease.

The fact that disease can be stigmatised is nothing new—from lepers wearing a warning bell to segregating people with a mental illness from the rest of society.

"For the first time we have taken a look at a whole set of conditions that result in stigma —physical, behavioural, psychological—and have gained a better understanding of the mechanisms behind stigma," said Dr Gerald Keusch, director of the Fogarty International Center, a part of the National Institutes of Health.

Dr Arthur Kleinman, a psychiatrist and medical anthropologist at Harvard Medical School, acknowledged the work already done in the United Kingdom: "Doctors, especially those in the UK, have been aware for a long time of the social roots of disease, such as the association of HIV/AIDS and tuberculosis with poverty."

"But," he said, "it’s not just that disease has social influences. It also has social consequences, and now funding agencies such as the National Institutes have recognised this."

The question now is how to develop research programmes that can provide useful data. The basic behavioural scientists say that we need to define stigmatisation more sharply, refining understanding of the processes of stigmatisation and of its consequences.

But the most important contribution is going to come from the applied sciences and will look at how interventions have affected health outcomes, according to Dr Kleinman.

"This is critical," he said. "I thought we would hear a lot more here about interventions, but we haven’t because they haven’t been done. So there is a pressing need for demonstration projects—very careful evaluations—that can tell us what works and what doesn’t regarding interventions. In determining the research agenda it will be important to develop programmes aimed at reducing or preventing stigma."

The next step was funding a research programme, Dr Keusch said. Besides the Fogarty Centre, the meeting was sponsored by several of the National Health Institutes, an indication of the widespread interest in the topic.