Skip to main content
Free

Studying Mandela’s Children: Human Biology in Post-Apartheid South Africa An Interview with Noel Cameron

Abstract

In this interview, human biologist Noel Cameron reflects on his work on child growth and development in post-apartheid South Africa. The conversation focuses in particular on Cameron’s involvement with a cohort study called Birth to Twenty, which sought to determine the health impacts of apartheid on black children born in the year Nelson Mandela became president. Cameron considers the extent to which human population biology can contribute to the creation of new and potentially improved health realities for marginalized communities in the Global South.

For over 20 years, human biologist Noel Cameron has studied child growth and development in South Africa. He coordinated an ambitious longitudinal study now known as Birth to Twenty, which followed a cohort of children born around the time Nelson Mandela was elected president (fig. 1). During the Wenner-Gren symposium “The Biological Anthropology of Modern Human Populations: World Histories, National Styles, and International Networks”—organized by Susan Lindee and Ricardo Ventura Santos and held in Teresópolis, Brazil, in 2010—Cameron’s reflections on his involvement in this post-apartheid project highlighted the role that anthropological interventions can play in documenting the violence of oppressive regimes and providing information crucial for rectifying injustice. Most striking to workshop participants was his observation that while old anthropometric techniques had certainly been used to enforce racial segregation, those same techniques could be used to demonstrate how apartheid’s consequences persisted in the bodies of black South African children. It was agreed that a focused discussion of Cameron’s interventions in South Africa would be a dynamic complement to the international perspectives on biological anthropology included in this supplement. Joanna Radin, a doctoral candidate in history of science with interests in postwar human biology, conducted the interview on April 21, 2010, at Princeton University, where Cameron was then visiting as professor of public and international affairs.

Figure 1. 
Figure 1. 

Birth to Twenty participants waiting for their regular assessment in 1998. These assessments were made at school and involved both anthropometric measurement and questionnaires (copyright Noel Cameron).

Radin: Let’s start with an intellectual biography: how did you become interested in doing human biology work?

Cameron: In 1967 I was doing an initial degree majoring in sports science. My second academic interest was biology, and at Loughborough University in the UK, where I was an undergraduate, I studied the relatively new subject of “human biology.” Human biology covered a lot of areas that interested me: anatomy, physiology, and, in applied anatomy and physiology, the role of exercise. We also learned about human growth and development. When I finished that bachelor’s degree in 1971, I wanted to continue studying human biology. So I applied for a masters degree that, uniquely, was being offered at Loughborough, and I was accepted to start in October 1972. My master’s thesis investigated how 17-hydroxycorticosteroids were released when stressed by whole-body vibration, such as that experienced by astronauts—so nothing really to do with human growth and development. However, one day my supervisor, Dr. Peter Jones, asked if I wanted to work with Professor James Tanner in London, who was looking for a research assistant. It was a wonderful opportunity because I’d read all of Tanner’s work, I’d studied skeletal maturity, and now I actually had the opportunity to work with the guru.

James Tanner is one of the world’s leading experts on human growth and development. His name is synonymous with the assessment of human growth and puberty, which is assessed using the eponymous method called “Tanner Scales.” His landmark publication was Growth at Adolescence (Tanner 1955), which for the first time synthesized the research undertaken, primarily in the United States, between 1920 and 1950 into a volume that dealt specifically with the biology of human growth during adolescence. By the early 1970s he was globally recognized as the European, if not the world, expert on human growth. Tanner’s Department of Growth and Development at London University’s Institute of Child Health was a mecca for scientists and pediatricians who wished to study both the normal and abnormal growth of children.

Radin: What do you think drove you to want to pursue these interests? Was it your background as an athlete?

Cameron: I’d always had an interest in biology. I had a teacher in high school, Trefor Jones, who sparked my imagination both in terms of sport and science. He loved the fact that I was captain of the school rugby team on Saturday afternoon, was acting as a lead in the school play on Saturday evening, and was in his biology class on Monday morning—enjoying it all. It seemed very natural that I should continue with this link.

The Tanner connection arose out of that initial course of human biology. I guess there was a link between the fact that I was doing sports science and a lot of sports science is about physical activity in children. There was that interest in how kids get better in terms of doing exercise, and so human growth was quite involved with that. Looking back, I think there was a logical progression from doing sports science to doing a master’s in human biology to joining Tanner’s department to doing human growth and development work to doing what I do now.

Radin: In the introduction to your 2002 edited volume, Human Growth and Development [Cameron 2002], you referenced your desire to put theory into practice, a theme that emerged early in your career. I wanted to get you to talk about how you wound up in South Africa and how that was informed by this desire to put theory into practice.

Cameron: Working in James Tanner’s lab was quite an experience. Nowadays we tend to work in labs that are fairly specific in terms of being primarily concerned with molecular, biological, behavioral, or clinical sciences. But Tanner’s lab at that time was a collection of about 40 scientists who were looking at all of these aspects, at the whole spectrum of human growth and development.

It was a multifaceted department that exposed me to the full breadth of human growth from behavior to biochemistry to endocrinology to statistical analysis and the analysis of human variation to dealing with growth disorders. And I was allowed, and expected, to be involved in all aspects of it. The clinical work involved the analysis of the growth of children presenting at the growth disorder clinics. I would do a complete growth workup for Tanner and his clinical colleagues, and after they had arrived at a diagnosis and treatment was initiated, my job was to follow up with repeat assessments and predictions.

From 1976 to 1983 I was also teaching a course on human growth to biological anthropology students at Cambridge University and working in London at the Institute of Child Health with scientists, clinicians, and community health workers in child health from developing countries. It was wonderful exposure for me to work with these scientists from all over the world. I would talk to them about how to set up growth studies and nutrition studies in their countries, which were mostly developing countries, and I hadn’t been to one (apart from Wales!).

After completing my PhD in 1977, I stayed with Tanner for another 6 years. I decided then that I knew a lot of the theory and some of the practice, particularly with regard to growth disorders, but here I was telling people how to do growth studies in South Africa, or wherever, and the basis of my advice was almost all theoretical.

I had often talked about putting my knowledge where my mouth was; to actually work in a developing country and find out firsthand what it was like to undertake research in these circumstances. I was therefore looking for a country that would provide that experience, and for a whole variety of reasons I ended up in South Africa.

Radin: Can you enumerate a few of those reasons, at least what you think the most important ones were?

Cameron: I hadn’t been thinking of South Africa as a destination. But a position opened with Phillip Tobias, who is a famous biological anthropologist. He was the successor to Raymond Dart, who had become internationally renowned in the 1920s for finding the Taung child—the fossil of Australopithecus africanus that became known as “the missing link.” Tobias had been a student of Dart and eventually became his successor as head of the Department of Anatomy at the University of Witwatersrand in Johannesburg. Phillip Tobias had developed an undergraduate course in human biology and wanted a human biologist to take it over. Given the absence of suitably qualified people in South Africa, he had contacted his colleagues internationally and thus spread his search to Europe. Tanner maintained that I was the “first human biologist” because I was the first student that had come through my graduate studies with him as a dedicated human biologist.

But of course this was a time of high apartheid, and I thought, what’s being done with blacks in South Africa? Probably very little, but let me find out. So I started reading around, and indeed there had been almost a total absence of work on black children in South Africa. Blacks in South Africa had suffered from 40-odd years of legalized segregation. It was a story waiting to be told.

I went down to Johannesburg for a week in 1983 to find out whether I’d be able to work there. Would I be able to get into the townships; would I be able to approach black children and get information, do the studies I wanted to do; were there facilities that would allow me to analyze such data? Would I be allowed to publish?

And, of course, many people said they wouldn’t go to South Africa because if you went there you were supporting apartheid. There were academic sanctions to prevent South African scientists from talking about what was going on. It was felt that merely by having a South African scientist in the room you were in some way supporting apartheid. So a decision to go and work there was one you had to take terribly carefully.

Radin: Were there people that explicitly advised you against it?

Cameron: Yes. But as a scientist interested in what I was interested in, I could only have achieved anything from inside the country, actually doing studies of human growth and development, identifying states of undernutrition, identifying the legacy of apartheid in terms of child health and growth. And by pinpointing areas where things could be done to improve infant and child health, one could improve human capital. You can only do that from inside the country.

In the week I was in South Africa, I got major reassurances from Tobias that “over his dead body” would anybody prevent me from publishing. So I decided to go for 3 years. I took the flight the evening of January 1, 1984.

Radin: And 1984 was also the year you published your book on methods that grew out of the Cambridge lectures [Cameron 1984]. In that moment, you’d drawn together a lot of informal knowledge around human growth and measurement and started to codify it.

Cameron: There had been no manuscript which had dealt specifically with how to measure children, none. There were manuscripts in anthropology on how to measure adults, but there were no measurement protocols for children. Tanner asked me to write a chapter for a compendium of three volumes that he and Frank Falkner edited called Human Growth, which came out in 1978 [Falkner and Tanner 1978]. I expanded the chapter into a book published in 1984, when I was in South Africa, in fact.

Radin: At this point it seems you had moved to another level of seeing how these methods could be used in a very different kind of context.

Cameron: The studies we had done were studies of normal UK children. I hadn’t had the opportunity to apply those methods in a developing-country scenario with children who were more extreme in terms of their health and well-being. Within 2 years of going to South Africa, I had started two longitudinal studies, both in rural areas, one in a place called Ubombo in Natal, which is now KwaZulu-Natal, the other one near the Botswana border on a farm in a place called Vaalwater. At the time nothing significant on the growth and health of rural children had come out of South Africa, particularly on farm children. It was known that farm workers were, relatively speaking, badly treated. They were, to all intents and purposes, indentured slaves. They didn’t earn enough to be able to leave, although they were paid according to a government-agreed amount that was pitifully small. This was an opportunity to get these baseline data about what was happening with rural children.

The contrast for me was dramatic; I’d been working in a center of excellence and sophistication in the Institute for Child Health in London, and a year later here I was sitting on top of a hill in South Africa measuring African children who were small and suffered from chronic levels of malnutrition, undernutrition, which nobody had documented.

Radin: And so what was the path from these initial rural studies to the Birth to Ten cohort study?

Cameron: By the time I’d been there a year, I knew I was going to be staying longer than 3 years because there were so many things that were crying out to be done and that I felt I could do with the skills and knowledge that I had. Other scientists in South Africa in the field of community health were pleased to see me because they knew Tanner’s work intimately. They described me as a “thoroughbred” from an excellent stable and were keen to suggest potential studies and ask for advice.

I was young and arrogant, and toward the end of 1986 I wrote to the president of the Medical Research Council [MRC], the equivalent to the head of the U.S. NIH [National Institutes of Health], and said that he really ought to give me a research assistant. I informed him that I was the only person doing human growth research in this way and the research would be fundamentally important in terms of child health, particularly as the country comes out of apartheid. By the late 1980s, it was obvious things were changing rapidly. The laws that had kept people apart, such as the mixed marriage laws, were being ignored.

Radin: So petty apartheid was starting to break down, and there was a growing social movement that allowed you to productively intervene?

Cameron: Exactly that—petty apartheid was breaking down, but “grand apartheid,” of course, was still there. I thought that my research was fundamentally important in monitoring the effects of sociopolitical change. With regard to my letter to the Medical Research Council, I didn’t hear anything apart from an acknowledgment that the letter had been received. Then in February 1987, Phillip Tobias, who was five doors down the corridor, asked me to see him. He told me that the MRC president [Professor Andries Brink] was coming up to Pretoria for a meeting and wanted to stop in Johannesburg for a meeting with Tobias and me! I was very concerned that Professor Brink was not pleased about receiving an unsolicited letter from this young upstart!

Radin: You didn’t know what the reaction was going to be.

Cameron: Hell no! I thought I was going to get rapped over the knuckles! Research in South Africa was very hierarchical. The president of the Medical Research Council was in charge of all the medical research funding in the country and was thus extremely powerful.

So, I was surprised when Andries Brink told me that the Medical Research Council recognized clearly that the country was going through dramatic change. Urbanization was part of that change, and they were concerned they did not have any information about child health in urban areas. He said that they appreciated that human growth was a core area. He invited me to initiate a study that the MRC would support to investigate child health in urban environments and introduced me to the MRC epidemiologist, Dr. Derek Yach.

Radin: They wanted you to collaborate with an epidemiologist?

Cameron: Yes, Derek Yach was the epidemiologist for the Medical Research Council. He and I immediately decided we would undertake a birth cohort study, based in Soweto. Soweto is literally the SOuthWEst TOwnship, 25 km to the southwest of Johannesburg. We wanted to get children at birth and follow them through to adulthood and learn about them, their mothers, and their families and what was happening in terms of maternal and child health in Soweto. We wanted a representative sample of both black children from Soweto and white children from Johannesburg. We very quickly got together with Lucy Wagstaff, who was professor of community pediatrics at Baragwanath Hospital in Soweto.

Radin: As you’re narrating the story about doing this growth study paired with an epidemiologist and a pediatrician, can you draw out what you brought as an anthropologist?

Cameron: It’s a question that comes up even now. I constantly find myself in competition, certainly for research funding, with epidemiologists rather than being in concert with them. In the “Born in Bradford” study I’m involved with now [http://www.borninbradford.nhs.uk], the head of the scientific research committee is an epidemiologist. When this birth cohort study was being set up, she and I would debate from epidemiological and biological standpoints. Epidemiologists want to do things on a global scale. They need samples of tens of thousands in order to study disease. We, on the other hand, as biologists interested in human growth, want powered samples in which we can determine “normal.” So the differences between us are that epidemiologists, and of course pediatricians, are interested in the “abnormal.” They’re interested in the disease state or in the unwell, abnormal child. Human population biologists’ major tool is specificity, whereas the epidemiologist and pediatrician’s major tool is sensitivity, statistically speaking. The debate between us is that I want a powered sample from which I’m going to get my normal data; they want a sample of thousands from which they’re going to be able to measure everything; things we know and things we don’t know. It’s a very different research design scenario. What has happened a lot in the history of birth cohort studies is that you end up with a design in which a large sample of individuals are assessed at specific points like birth, 5 years when they start school, and maybe 10 years just prior to puberty. But a small subset of 1,000 or 2,000 or 3,000 children are then followed much more closely. In the Bradford study we ended up compromising in that we enrolled about 15,000 and we’re closely following 1,000.

Radin: That’s very interesting.

Cameron: Yes, terribly interesting, but because I want normality and she wants to look at all the things that go toward disease state, in the party of myself and the epidemiologist and the pediatrician, we were bringing different things to the table. In the Birth to Ten study, Lucy Wagstaff was bringing an intimate knowledge of the health of children, and particularly babies, in Soweto—and she’d been dealing with them for 20 or 30 years. Not only did she know the babies and their mothers, she also knew how the health system operated in Soweto, which was very different from the way it operated in Johannesburg. Derek brought this completely global epidemiological approach. And he knew how to deal with the Medical Research Council; who to talk to in order to get things done.

Radin: And you were where?

Cameron: I was the chairman, and apart from keeping those two together, my job was making sure we had a viable study. In terms of what we were going to study, what measurements we were going to take, what assessments we were going to do, how often we were going to do them in terms of the research design itself, I was the one doing that. We were all absolutely fundamentally important within that scenario.

At a time of major social upheaval, three white people deciding they’re going to do a growth study in Soweto was impossible. You couldn’t decide you were going to do a growth study in Soweto unless the community representative—the head of their health service—agreed. Lucy Wagstaff arranged a meeting with the three of us and the head of Soweto Health in a clinic in “deep Soweto” to meet this man. We arrived at the place, which had a security fence surmounted by barbed wire around it. We’d agreed beforehand that Derek would be the spokesperson, and Lucy and I would nod and be supportive. He ultimately granted us approval to do the study by the simple act of offering us a drink of schnapps—at 10:30 am. This was a surprise to us all but not to be refused if we wanted our study!

Now of course things would be terribly different, but at that time he wielded enormous power. The way in which health was run in Johannesburg and Soweto was totally different as a result of separate amenities. In Soweto there were 13 clinics and one computer that dealt with maternal and child health for a population the same size as Johannesburg, in which there were 67 clinics and almost as many computers!

Radin: Getting this man’s approval was a critical component for beginning the process of engaging social participation.

Cameron: It was getting permission to even approach an idea of doing this. The study was going to be based in Baragwanath Hospital, which is the biggest hospital that serves the black community in Soweto. We could get data from whites, Asians, and the colored community at different hospitals. Word spread by mouth with regard to the fact that Birth to Ten had been approved. At the time, people did not believe you could do a study like this. There’d only been one other birth cohort study done in Africa, in East Africa, in Kenya.

Radin: So “people” being scientists in South Africa or just in general?

Cameron: Scientists, community health workers, and academics. When we started to develop the idea of a birth cohort study, we knew that there was no way myself, Lucy, and Derek could do it on our own. I wanted to build a team composed of experts in different areas. I wanted to sell the study to other groups like community health departments. Time and again, I was told “You’ve got no chance. This is not going to happen. It’s not going to work. Either you won’t get the mothers to volunteer, or you won’t collect the data, and you certainly won’t keep it together for very long because the [sociopolitical] situation’s too volatile.”

Radin: What made you keep going?

Cameron: Ebullience. This was fundamentally important. I don’t know if Derek and Lucy felt this, but I did—that this was fundamentally important in terms of describing the human condition with regard to the township. It was certainly important in defining a baseline of the legacy of what had happened over the previous 40 years. It was too important not to do, and at no point did I ever think that I wouldn’t do it … even when we started, when we didn’t have any substantial financial support for the study.

Radin: So who did fund this study?

Cameron: Anybody I could persuade to release money. The Medical Research Council, of course, had funded from the beginning. The Anglo-American Corporation had a chairman’s fund for the uplift of black people. I met with the chairman and got almost matched funding. I also got funding in kind. For instance, I attended a Sunday lunch one day, and one of the other guests owned the local franchise for Kentucky Fried Chicken. As a result, the first vehicle we got to transport mothers to the research centers had a big sign on the side saying “Kentucky Fried Chicken—Colonel Sanders supports the Birth to Ten birth cohort.” It didn’t last long—we only used it for two weeks and then it got carjacked at gunpoint inside Baragwanath Hospital! But we got anything we could.

Radin: What was the evidence that as apartheid ended the cities were going to be flooded with people?

Cameron: There was this 3.5% urbanization rate from the latest census, which meant there were going to be 14 million people coming into urban areas by 2000, and Soweto was one of the biggest urban areas with shanty towns both within it and around the outside of it. And yes, people were going to be migrating at the rate of knots, and we had to have some baselines, we had to know what was going on. We had to be able to quantify, as it were, the legacy of apartheid.

Radin: What techniques did you need to innovate in order to deal with the circumstances of being in Soweto and getting people to come back and participate?

Cameron: That was the most difficult part of what we did. The methods of assessment were the same as they’d be anywhere else. But the methods that created and sustained longitudinality were the result of a learning experience because this had never been done in this environment. These were moms living throughout Soweto and throughout Johannesburg, and we had to get to them. We organized through the community health system and well-baby clinics through the fact that the moms visited the clinics and that the community health nurses were on board with us, and if the mom didn’t come, the community health nurse would find the mom. Looking back 20 years later, I’m not 100% convinced that at that time the moms knew what a longitudinal study was or even saw themselves as being part of a cohort of mothers with infants who were going to be seen for X amount of time.

Radin: How was the study explained to them and by whom?

Cameron: The moms came for a checkup at the antenatal clinics in the hospital. There would always be a queue in South Africa, particularly for health care, particularly amongst black people when there weren’t enough doctors. And the queues would last for hours. So moms were only too happy that you sat down and talked to them. Not that I would sit down of course because I was a white English male and it would be totally inappropriate. But we had black female researchers who would explain the study to them in their own language.

Radin: So these were other community health workers?

Cameron: We tried to get retired community health nurses. They were the grandmothers who’d worked in community health all their lives, who knew everybody. We got about a 75% enrollment at that time from eligible moms. In later years we were able to see children who were born within the time frame we were working in who clearly should have been part of the cohort and who we’d missed or their moms had initially said no. We had a window of really about 5 to 6 weeks to obtain the sample; that timing was based on pilot studies to look at birth rates and seasonal variation.

Radin: And this was during the period Mandela was freed from prison, right?

Cameron: He was released on February 11, 1990. And we started on April 23, 1990, so we colloquially use this expression “Mandela’s children” to talk about these kids who were the first generation in a post-apartheid South Africa. You can’t, in any way, diminish the importance of the fact that this was a post-apartheid world. The way in which one felt, thought, talked, and worked was very different after Mandela’s release.

Radin: What would a typical visit, a typical kind of session be with a mother say bringing her child in maybe at 5 years? What kinds of measurements and examinations would be done?

Cameron: There’d be all the standard growth measurements like length, height, and some skinfold measurements, and the circumferences of their head and the …

Radin: So traditional anthropometric techniques.

Cameron: Traditional anthropometric—I mean taken from my clinical work in England and now applied to these children—the standard measurements to assess the changing morphology of a child. There’d also be a questionnaire from which we’d ask the mother about social circumstances, which we would then translate to socioeconomic status. There were questions about illness and also about the social environment in which the family lived—the number of people who lived in the household, how many rooms in the house [see Richter et al. 2007]. Importantly, this would be done each time the mom came so we had an estimate of what things were dynamic within her life and what things weren’t. I had been concerned that people only measured socioeconomic status at one point in time and used the same variables, whether individually or in the form of indices, to describe socioeconomic status or social class. You’ve got to move away from social class to socioeconomic status so you’re talking about what is functional and dynamic within an individual’s life.

Radin: Do you think this was your perspective coming out of biological anthropology? What do you think made you focus on this?

Cameron: I think my experience in longitudinal research projects was the primary driving force, the fact that time-series analysis tells you that there are very few environmental factors that have a continuous and constant effect on a biological process, particularly one as plastic as human growth. But it wasn’t just me who was realizing that cross-sectional assessments of social class within a longitudinal model were inappropriate. There were departments of social sciences in all the universities in South Africa who clearly knew this was inappropriate. But my issue was that social class changes. The way in which these variables interact changes so that maternal education is recognized as being a major variable that impacts the health of infants. It affects how long she breast-feeds and what sort of food she gives the child, whether the child gets immunized, levels of hygiene, how she takes on board the health messages that are thrown at her all the time. But by the time the child gets to 5 years, it’s not about maternal education; now it’s about how much money there is in the family to devote to keeping the child in a situation in which he can stay at school and so on. And so now economy becomes the most important variable.

Radin: I’m starting to get a feel for the complexity of the study. I remember you said at the Wenner-Gren conference that you tried to get people to feel like it was their study as well. At what stages did that message start being explicit, and how did you and your colleagues encourage that kind of sense of ownership and participation in the study?

Cameron: I left South Africa in 1997. I’d been there a decade since the initial discussion with the president of the MRC, Andries Brink, and by now Birth to Ten was a big study. We had over 4,000 children, and because it was clearly working, everybody wanted to get on board. The Medical Research Council was giving major backing. It was viewed as a cornerstone of what the South Africa Medical Research Council was trying to achieve, to demonstrate that they hadn’t been dragging their feet toward the end of apartheid but actually had been working toward post-apartheid South Africa. It was used very much as a political tool. But the work was still getting done, that was the important thing. And I was leaving the study to go to the UK, which opened up a whole new avenue of funding because I could apply as a UK-based scientist for funding that linked me with a developing-country scientist. And so a whole raft of funding from the Wellcome Trust became available. Some of the biggest medical grants that South Africa had came directly from that association and continue to do so.

In 2000–2001 we appointed a project manager, Dr. Shane Norris, who was a lecturer in the Department of Physiology with strong links with Professor John Pettifor, chair of the Department of Pediatrics at Baragwanath Hospital. Shane was excellent, and he’d learned very quickly about how to manage the study. He was also very good at public relations. He realized that for the study to keep going and to keep our attrition rate minimal, we had to get the participants to take ownership.

Radin: As the children themselves were becoming adolescents.

Cameron: Exactly. So we had to get them to take ownership of the study.

Radin: Can you talk about what he developed in order to do that?

Cameron: We were doing talks, we were having meetings in Soweto, public meetings, in which we’d talk about what was going on and what we were doing and the sort of results we were getting. But he got into developing newspapers.

Radin: Like a newsletter?

Cameron: A newsletter, yes, that would go out to the kids. He developed a Web site, and we changed the logos completely, so now they were three hip adolescent kids as the focus. The participants communicated by text and by Internet and through the Web site. They had a space in which they could talk about what they were doing, like in Facebook. The title was obviously changed from “Birth to Ten” to “Birth to Twenty.” And underneath “Birth to Twenty” it said “Your National Heritage.” The original logo [fig. 2], which had three children holding hands and playing, had been initially chosen by the moms. They were very childlike drawings of three children holding hands, and the r in “Birth” was back-to-front as if a child had written it. We’d had all sorts of things done around that logo, like fridge magnets with a space in them to put the date of the next appointment. Shane Norris changed this logo [fig. 3] and developed the idea that the kids should be able to share with each other the experience of being in a study. So it took the emphasis away from the moms, who had kept them in the study for that first 10 years, to themselves.

Figure 2. 
Figure 2. 

Birth to Ten logo associated with the study from 1990 to 1998. The design of the logo was chosen by mothers of participants (copyright Birth to Twenty).

Figure 3. 
Figure 3. 

Birth to Twenty logo associated with the study from 1998 onward. Note the logo is more informative and illustrative and implies participant ownership of the study (copyright Birth to Twenty).

The change of title from “Birth to Ten” to “Birth to Twenty” came about when it was clear that we were going to be able to move beyond the first 10 years. That realization came with significant funding obtained in the late 1990s—after I had returned to the UK—to primarily investigate issues relating to historical and current factors that place young people at risk during adolescence and in later life for sexual and reproductive disorders and diseases associated with lifestyle. An eminent South African psychologist, Professor Linda Richter, was the major force behind that aspect of the study [see, e.g., Richter, Norris, and De Wet 2004].

Radin: And ostensibly they’re getting information about themselves from the study. What mechanisms were there? Was it in the newsletter? How were they learning about how they were doing?

Cameron: The initial Wellcome Trust funding we’d got was to create this substudy to look at bone health. That was an intensive powered study of about 700 children who got feedback on the results we were getting. Shane Norris provided that feedback through these newsletters. You can give individual feedback like that, but you can’t provide descriptive statistics on the group because it takes time to analyze the data. One of the biggest problems we faced in South Africa throughout the study was the expertise to deal with the amount of data we had. None of us had appreciated how quickly we’d start accumulating information. We were dealing with literally millions of bits of information.

Radin: That’s related to something we talked about a lot in Teresópolis: collections. How did you make sense, begin to even think about interpreting and then maintaining this information?

Cameron: Very rapidly we realized that there was no way we could handle the amount of data that we were dealing with because it grew exponentially. We couldn’t find experts, around the world, who knew how to handle this sort of information. All the American longitudinal studies that formed the basis of what we knew about human growth up to and even after the Second World War were all paper based.

The biggest challenge was data handling; how to store, analyze, edit, clean, recomputerize, get it out; and then how to manage its use by other people. So then you get into the question of ownership of data.

Radin: Yes, can you talk about that?

Cameron: Absolutely. Initially, when we started thinking about the study in the 1980s and the 1990s, ethics approvals [for research] were in their infancy in many respects. I didn’t come across an ethics committee before the 1980s. The idea of the data being owned by the people from whom you’d got it hadn’t crossed anybody’s mind to some extent. It was only toward the end of apartheid and of a realization of rights of the “participants” as opposed to “subjects” of research that we began to think about who owns the data. This was interesting because before that the scientists would have arguments between themselves about whose data it was.

Radin: Right, data ownership has a lot of registers.

Cameron: Of course it does. I mean if I initiated the study it’s “my” data. But you had to do a complete about face and say, actually, “it’s got very little to do with me. The data’s not my data, the data in some way is owned by the participants. This is information about them.” But ideas of data protection didn’t exist.

The ownership issues came amidst scientists’ realizations in the 1990s of participant involvement in and ownership of scientific research. I will always remember the comments of a South African student of mine who said of our sojourns to collect data in rural areas like Ubombo that it was like the whites were coming and stealing the puberty ratings of the indigenous population. He was, of course, playing on the idea of American cowboys and frontiersmen stealing from the Indians. As if we were Kit Carson and his cronies coming in, getting information, and leaving. He was voicing a very real concern that we were coming once a year to Ubombo, getting this information, and not actually giving anything back to the community. Things changed in many respects around that time. After about the first year, we collected books from the private schools in Johannesburg and set up libraries in the rural schools and got decommissioned microscopes from the anatomy department that were still perfectly functional and set up laboratories in the schools so that we were putting something back into the community.

Plus the organizations giving research funding, for the first time, started requiring us, within our research applications, to say how we would make data available to a wider community. You had to write a whole section on the accessibility of data. But that didn’t happen until the mid to late 1990s. That goes back to the ownership issue because a lot of the arguments had to do with, “well it’s my data; but why should anyone else have access to it?” That was painful because it took blood, sweat, and tears to get the data. You dedicate part of your life to doing this sort of work, and then someone decides they want your data that you’ve worked hard on and that you’ve paid for in one way or another.

Radin: And is it yours even to give?

Cameron: Well exactly; is it yours to give? And at what point do you say no? You’ve got to go back and ask the participants whether you are a fit person scientifically and in every other way to use their information. These are really difficult questions. Probably every research group comes up with their own way of dealing with them. I’m sure there’s no uniformity across the world because the circumstances and the communities with which you are working require different things. We have an access policy. We have a Web site [http://www.wits.ac.za/Academic/Health/Research/BirthTo20], and on that Web site anybody can go in and say, “we’d like to access the data.” You apply to do so, you write about what it is you want to do, your bona fides of course obviously have to be appropriate, and then you can go and access a data set restricted to your requirements. The data is, to all intents and purposes, publicly available but only to certain members of the public who are qualified and then only to the data that is of proven interest to them.

Radin: Is this an agreement that was reached in consultation with the participants?

Cameron: No, it was an agreement that was reached in consultation with the funding bodies that paid for the data to be collected. With the participants, certainly, and I may be wrong about Birth to Twenty now, but certainly in the time of Birth to Ten, there was no sort of advocacy group from the community. Because of the historical times, we didn’t have a committee that talked about that. In the Born in Bradford study I’m involved with now, we have an advocacy committee made up of community elders and moms and people in the community who we do talk to about all of these issues.

Radin: Of course that model would have to be particular to that society, right? You can’t necessarily say, well this works in Bradford so it’s going to work elsewhere?

Cameron: Absolutely, because the people who are viewed as being responsible individuals within a society will differ depending on the community. Bradford is 30% Pakistani, and 50% of our sample is Pakistani. The way their society is organized is different from the way in which the European-descended society living next door is organized.

So if you want an advocacy group, you’ve got to find out from the people who they are, which means, interestingly, that the design of your research group of scientists has got to include people who know the community and are even from the community. And I don’t suppose for one second we would set up a study called Birth to Twenty in South Africa now without having a number of black scientists and clinicians involved. Indeed, we do have them on the team now. In South Africa in the early 1990s there weren’t these people qualified to help us—apart from the community health nurses, who of course were all black—there weren’t any individuals with research experience, knowledge, or desire to work with us. What we did do in Birth to Ten, which was fairly unusual at the time, is that we translated our questionnaires and materials into four different languages. We had English, Afrikaans, Zulu, and Sotho. Zulu and Sotho are the two big languages in Soweto.

Radin: I think this is a nice transition point to ask what have been some of the tangible impacts for public health policy. What are some of the major outcomes of the South African studies?

Cameron: The major scientific findings from Birth to Twenty have really only emerged during the last decade as the data management issues were sorted out and we were able to apply relatively sophisticated statistical modeling procedures to our time-series data. One set of results concerns the development of risk factors for noncommunicable diseases of lifestyle such as Type 2 diabetes mellitus, obesity, and cardiovascular disease. We have been able to demonstrate the emergence of these risk factors in Birth to Twenty children as young as 7 years of age who characteristically have relatively low birth weights and grow extremely rapidly during infancy [Crowther et al. 1998, 2000]. These results demonstrate the need for early intervention to change habitual behaviors relating to diet and physical activity.

We have undertaken focus groups with adolescents to learn about their dietary habits and nutritional intake. We have been able to identify a “nutritional transition,” common to the children in other transitional economies, in which traditional high-fiber, low-fat diets are being replaced by low-fiber, high-fat, high-energy diets characteristic of industrialized societies. The result of that transition is a greater prevalence of obesity, particularly amongst girls. Recent research on Birth to Twenty 17-year-olds, for instance, identified that they consumed about eight fast-food items each week and most frequently consumed an item called the “Soweto Quarter.” A typical “quarter” consists of a quarter-loaf of white bread, chips [fried potatoes], a slice of cheese, and any number of delicatessen meats and sauces. A macronutrient comparison between a “quarter” and three commercially available fast-food meals demonstrated that the “quarter” provided 5,970 kJ of energy at a cost of about 9 SAR, or about $1 [Feely, Pettifor, and Norris 2009].

But I think the major outcome is almost an intangible one in many respects. In some ways it probably links into the public understanding of science. The study has raised the level of knowledge, interest, and understanding of the importance of child health and child growth in everybody’s minds. It makes them topics that are discussed and are understood as being important. Some of the more important things are the stories in South African newspapers about the fact that we’re investigating child health, the fact that child growth is important, the fact that immunization is important, the fact that children can recognize the brands of cigarettes by the age of 5 is important in a bad way, the fact that you know moms lie about their children’s age to get them into school early.

Radin: So a kind of anthropological information?

Cameron: Well absolutely, because scientific information is for scientists; we publish it in scientific journals using our own language, which is almost indecipherable to a nonscientist. So when we come to write something which is nonscientific, it’s really difficult. The Avon Longitudinal Study in the UK has two full-time public relations people, both of whom are ex-journalists. The whole reason being is if you want people to keep participating in the study, you want them to understand it. But the story you have to tell is one that’s different from the story you tell scientists.

Radin: That leads me to two branching out questions. One would be how has the data that emerged from this study impacted thinking about human growth and research trajectories in the scientific community? The other branch is who’s doing the work of taking the data and putting it into practice at the level of policies?

Cameron: The same message is told in different ways to those different communities. For the policy makers you need to give the information in such a way that they can use the information to make policy. This is done by ensuring that information from Birth to Twenty gets to the right decision maker. A lot of that’s done by word of mouth. For example, if there’s going to be a major initiative in terms of child nutrition in urban areas of South Africa, the first thing they need to do is identify whether children are malnourished or not. You’ve got to start doing measurements. The only measurements against which one could compare the findings are the data we have in Birth to Twenty.

Radin: And have there been specific policy decisions in South Africa?

Cameron: As an example, the adolescent fast-food consumption study I mentioned before provides empirical evidence for those wishing to improve the health of all children in South Africa through awareness of poor dietary habits. Residential mobility within the urban environment is another important policy issue with regard to the provision of housing and the distribution of state benefits. Data from Birth to Twenty has been able to demonstrate that by the age of 14 years, 64% of our urban sample had moved house at least once and only one-third of the sample had been stable, with clear implications for the traceability of individuals and households [Ginsburg et al. 2009].

The other ones you’ll read about are the things like tobacco and about ages of school entry. But there is a whole variety of factors that are almost hidden effects of having a study like this in that people in policy-making areas that know about the study will think, is there something that Birth to Twenty can teach us about this, published or not published, and will contact Birth to Twenty and say, “what have you got about this information?”

Radin: So there’s almost this informal intellectual economy or traffic in ideas happening.

Cameron: Absolutely. I mean the same way in which we do that by reviewing grant applications. The way in which I criticize a grant application depends upon my experience and my knowledge. Part of that comes from studies that I’ve done and the research that I do and the research I’m interested in. In the UK, we have to include a section on how the proposed project will affect policy. There’s an ongoing debate about “blue sky” research, which we didn’t have to contend with 20 years ago. Now, I have to start thinking about how my research can not only be published in an international scientific journal for the benefit of the scientific community but also how it can be put to the government to influence policy.

Radin: Are people in other transitional societies in the Global South drawing examples and lessons from this study? Is there a unique role for birth cohort studies to play both in terms of scientific knowledge and societal change?

Cameron: The unique thing about birth cohort studies of course is that they are longitudinal studies of a particular group of children born in a particular historical moment in time and that their growth, because growth is so plastic, is going to reflect what’s happening to them now and what’s happened to them in the past. They are the only method by which we can gauge or monitor how changes in society are impacting the health and well-being of children.

The major birth cohort studies that have been done in the Global South are the CEBU study in the Philippines, the Pelotas study in southern Brazil, and Birth to Twenty. Certainly they are the three that most people in this field would think of as relevant. We actually believed for a long time that Birth to Ten was invisible to the rest of the world. People mentioned CEBU and sometimes mentioned Pelotas but hardly ever mentioned Birth to Ten/Twenty, and we couldn’t understand why. I can remember at one time thinking it was because we were doing it within South Africa.

Radin: In a way you could argue that this project and activities like it have actually altered knowledge practices themselves.

Cameron: Well I think so. I mean the idea of doing a longitudinal study is that these children are born in a particular moment in history. The study may exist for 20, 30, 40 years depending on how long you want to see them during times of changing political and social circumstances. You’re getting this record in their health, in their morphology, in their psychological attitudes, in their social interactions that reflect those changes in societies. They’re very complex and exciting studies because of that. If you want to look at anything, you’ve now got a whole history of factors that can allow you to determine at least some of the variants in an attribute. You couldn’t do that on a repeated cross-sectional study. You can only do that with birth cohort studies, so they’re incredibly powerful from that point of view. One of their problems, of course, is that—and this is the clash between the population biologist and the epidemiologist—unless you have a sample of tens of thousands or at least thousands, you won’t get a sample large enough in their 20s to be able to use that information statistically because your attrition rate is so great.

Radin: At the conference, you talked about human biologists having a moral obligation to do work that takes into consideration historical, social, and political contexts. It’s very evident how important that is for you. Do you think this sense of moral obligation is shared by others in your profession? As a teacher, do you think it can be cultivated?

Cameron: Do I think it’s shared within the scientific community? In my experience I’ve come across people who are committed to doing research in this area. They’ve chosen to work, for instance, in a developing country because it’s important to them to be involved in improving the quality of life of people who are disadvantaged. It’s pretty difficult to work in a developing country if you don’t have that degree of commitment because it’s a very challenging circumstance. You’re going to measure some child in the middle of nowhere and crawl into a tent and …

Radin: And touch them.

Cameron: Yes, you’re going to be touching other people, and how fundamentally important is that? There’s an intimacy and therefore there’s an enormous sense of trust that not only will you be kind to them but that you touching them has to do with getting objective information. And also that what you will do with the data is morally just and wouldn’t be used to denigrate or to belittle them in any way, shape, or form. That’s an incredibly strong responsibility that we take with us, both into the field to do this type of work and away from the field with the data that we have. I would say the vast majority of people I work with have that level of understanding of their responsibility. Those that don’t are quickly told that they shouldn’t be working in this area because they clearly don’t understand what it is they’re doing or why they’re doing it. How do you get students to understand that? In my experience, you show them what it means. Every year I took my students and staff into the field. They came with me into rural areas and measured and got information, talked to the children, gave lessons in class in these schools as part of their giving back to the community. By just being involved, they grew enormously in terms of their attitude. And many of these were white South African students who grew as a result.

Radin: What’s interesting about your work is that you’ve taken certain older anthropological techniques used in creating systems of apartheid and used them to point out the violence and to rectify it. You show that it’s not the science that is good or bad but rather how people use that science. But who is supposed to ensure that the tools and products of anthropology are used for “good” in the promotion of health and well-being?

Cameron: A good question. Who is supposed to police it? Of course one individually polices one’s own work and that of one’s immediate colleagues and students. But learned societies in many respects become the policemen. I was invited in 1990 to give a special lecture at the annual meeting of the American Human Biology Association in Miami about my work in South Africa. At that time I always finished my written papers and my spoken lectures with the statement, “This work is dedicated to a post-apartheid, nonracial, democratic South Africa.” Following my talk I was in the business meeting of the association, and a voice from the back of the room proposed a motion that “this Association does not invite South African scientists, or scientists working in South Africa, to the annual meetings.”

There was uproar. People turned and shouted at the proposer, “Did you hear what he said? Did you go to his lecture?” The proposer said “No, I boycotted his lecture.” And they said, “He spoke against apartheid. How can you say that he shouldn’t be here?” The president said he said that a motion had been proposed [about whether or not I should be there] and asked for a seconder. Nobody said a word. And then he said, “There’s no seconder to the motion so there’s no motion.” And that was it. This was a situation where the learned society was policing the moral dimensions …

Radin: But not in a way that you would have expected; they were trying to protect those who were seen as doing responsible work.

Cameron: Exactly that. So societies do—and even now at business meetings of the Society of the Study of Human Biology, what people say and talk about is policed and criticized left, right, and center. It’s that sort of openness, in critical discussion, of what one says and does that polices one’s science.

Radin: What about those who say, “Well I’m a scientist and I do objective research and I can’t be bothered. This isn’t my role.”

Cameron: There were many scientists who did exactly that. They can’t be bothered and they are not political. Well you can’t avoid taking a stand because by not saying anything you’re saying something. You’re making a statement that you are so morally devoid of responsibility that you will not say anything when faced with a situation that cries out for you to use your skill to do something. The moral responsibility of a scientist in the situation of South Africa in the mid-1980s was that if you had skills that could be used for the betterment of society, particularly those disadvantaged in societies, that you should damn well get out there and use them. And you’re morally bereft if you didn’t. I’m talking about the personal responsibility to other people in the global society that you live in. It’s man’s humanity to man, which is so terribly important.

References Cited

Notes

Joanna Radin is a Doctoral Candidate in History and Sociology of Science at the University of Pennsylvania (249 South 36th Street, Cohen Hall, Suite 303, Philadelphia, Pennsylvania 19104, U.S.A. []). Noel Cameron is Professor at the Human Biology Research Center, School of Sport, Exercise and Health Sciences, Loughborough University (Loughborough LE11 3TU, United Kingdom []).