Transcript of WHO podcast - 15 August 2008

The role of ethics in global public health and the key ethical questions that arise during demographic and health surveillance discussed, in the context of this month's Bulletin of the World Health Organization.

Ravini Thenabadu: You’re listening to the WHO podcast. My name is Ravini Thenabadu and this is episode 42.

In this episode, we look at the role of ethics in global public health and the key ethical questions that arise during demographic and health surveillance.

Story

Many developing countries don't have good systems for collecting data on the health of their populations. Often the best source of data comes from demographic and health surveillance systems, which are long-term studies of small areas within these countries, selected for particular disease or fertility patterns. Studies can span many years and sometimes even many generations.

In this month's issue of the World Health Organization's Bulletin, Margaret Carrel from the Department of Geography at the University of North Carolina poses some serious ethical questions about this kind of surveillance.

Margaret Carrel: The first one is really the process of informed consent and autonomous opt-in decisions. When you need an entire study population, with every single person within the area to be registered, then people don't necessarily have complete freedom to say yes or no. And if all your neighbors or family members have consented, it is difficult for you to say "I'm not going to participate in this study."

If your parents consented for you when you were a child, or your grandparents consented when you were a child, then at the age of 18 or majority, are you going to be able to say "I no longer want to participate"?

If opting out of the surveillance means that you no longer receive benefits such as health care then maybe you won't feel that you can really opt out.

Ravini Thenabadu: She explains how long-term demographic and health surveillance studies have helped advance public health. One example is the development of oral rehydration solutions.

Margaret Carrel: The data and interventions that have emerged from long-term demographic and health surveillance have improved or saved the lives of literally millions of people around the world, and the sheer importance in the value of human lives in the developing world means that we cannot ignore some of the ethical dilemmas.

Ravini Thenabadu: Alex Capron, former director of the Department of Ethics, Trade, Human Rights and Health Law at WHO and currently lecturing in medical ethics at the University of Southern California, explains why these long-term studies have unique ethical considerations.

Alex Capron: Activities that involve, for example, surveillance of a population fall in between straight delivery of services, on the one hand, and research on the other. They raise a number of interesting questions.

In terms of ethical expectations, we have a number of fairly well-developed standards for biomedical research. We also have some standards for epidemiological research but those are not as well understood and they are not as fully developed yet.

The rights and welfare of people can be very much affected by epidemiological surveillance just as it can by biomedical clinical trials. It is important therefore that we proceed in a way that is thoughtful, and that offers an opportunity for the affected populations to become involved in resolving these questions. This provides a means of moving forward collectively towards a better agreement on what the expectations for ethical review are and what ethical standards should apply in the future.

Ravini Thenabadu: We also asked him what role ethics have in public health.

Alex Capron: The formulation of good health policies depends on several things. One is obviously a good set of facts and understanding of what the problem is, but also choices have to be made.

So the role of ethics is to bring out those choices, the implications for people's lives and wellbeing and for respect for the rights that they have and to give a framework for making the right choices. This relates to issues like the allocations of resources, who is going to get care, what kind of research is going to be pursued, what kind of subjects are going to get priority, but also questions about the way, for example, research is conducted and how public health activities are carried out.

What ethics brings to that is to tease out the values that are at stake, what is going to happen to people one way or another, and to try to have the people who make the decisions do it in the light of the welfare of the people affected, and with respect for their opportunity to make choices about their lives.

Ravini Thenabadu: Ethics is the theme of the August issue of the Bulletin of the World Health Organization. Margaret Carrel’s research is one of many papers featured. As WHO’s flagship monthly journal, the Bulletin presents peer-reviewed research and commentary on important public health issues particularly in developing countries. It was created by WHO as a forum for public health experts to publish their findings, express their views and engage a wider audience. The Bulletin is available free online at: http://www.who.int/bulletin

That's all for this episode of the WHO podcast. Thanks for listening. If you have any comments on our podcast or have any suggestions for future health topics drop us a line. Our email address is Podcast@who.int.

For the World Health Organization, this is Ravini Thenabadu in Geneva.