Conducting Public Health Research on Indigenous Australians - Essay Example

Conducting Public Health Research on Indigenous Australians Should Australian public health officials be able to conduct research on Aboriginal Australians? This seems like a question that has a straightforward answer. Why not, since Aboriginals are also Australians, inhabitants on Australia before Europeans took over control. Actually, the history of the Australian government and its relationship with Aboriginals leaves a lot of room for scepticism whether those in mainstream Australian society can be trusted to do research on Aboriginals without infringing on their rights. There is no question that most researchers pride themselves on their objectivity and commitment to the truth. Also, the work of researchers, especially those in the public health arena, can be of direct benefit to the subjects in particular and to society as a whole when the results lead to changes in habit, the development of medication or health policies that improve the well-being of all in a community or a society. To understand why such a simple question as whether Australian mainstream researchers ought to be able to conduct research on Aboriginal populations one has to revisit the events in another country and in another era, the famous Tuskegee syphilis experiment in the United States, and draw parallels that will resonate with anyone who cares both about the health of Aboriginals and the future of Australia as a nation that deserves respect in the world. This paper argues that in order for those in mainstream Australia to regain the trust of the Aboriginal community independent referees chosen by Aboriginal leaders and perhaps with the input of the United Nations need to oversee any research involving Aboriginals. The Tuskegee Study of Untreated Syphilis (TSUS), though embedded in medicine and research, highlights some of the grim realities of America and what disregard for the lives of others can lead to. More than just being a classic case of neglect or disregard for the lives of others, this case showed in crystal clear terms that some of those in the mainstream placed no value at all on the lives of black people. In that study, which ran between 1932 and 1972 a study was conducted by the U.S. Public Health Service (USPHS) in rural Alabama. The study involved two groups of African-American men with syphilis who were followed through their lives up to death and autopsy. The control group comprised about 200 apparently non-syphilitic men of African-American heritage (White 2002). The main purpose of the study was to find out what syphilis does to the body. In other words, the government, which conducted the study, had not really been interested in treating the subjects of the study. The people who were enrolled in the study were told that they had “bad blood” and that they were being treated for it. Many of the African-Americans in the study were illiterate and thus they easily accepted what the government told them. “Bad blood,” after all, was a local term used to describe various illnesses including syphilis, anaemia, and even fatigue (Remembering Tuskegee 2002). In fairness, when the study began, there was no treatment for syphilis. By 1947, however, penicillin had become a fairly standard treatment for syphilis but the government did not provide the African-American syphilis subjects with the treatment. “For participating in the study, the men were given free medical exams, free meals and free burial insurance” (Remembering Tuskegee 2002). This was really the only “benefit” that the enrollees got for their participation, not the glory of contributing to some useful scientific or public health agenda and research. By the time the story was leaked to the media, forty years had passed, and most of the men were dead. Not only that, many wives and children had succumbed to infection. In 1973, the National Association for the Advancement of Colored People (NAACP) filed a class-action lawsuit. A $9 million settlement was divided among the study's participants. Free health care was given to the men who were still living, and to infected wives, widows and children. But it wasn't until 1997 that the government formally apologized for the unethical study. President Clinton delivered the apology, saying what the government had done was deeply, profoundly and morally wrong. (Remembering Tuskegee 2002) What is chilling about this story is that the experiments in question were not done by some mad scientists hiding out somewhere but by some of the government’s top scientists, people who had been entrusted with the protection of public health. That such a terrible thing could happen has to be put in the proper context, a reality that might seem harsh for some to understand or accept. The Tuskegee experiment was possible because the subjects of the study were not considered fully human by those in the mainstream who were in charge of the experiment. Just as the American and Canadian mainstream population groups have consistently denigrated, ignored, and sidelined their African-American and Aboriginal populations respectively, so has Australia shown little or no regard for its Aboriginal populations, at least, until recently. The lack of respect for Australia’s Aboriginal people is reflected clearly in the notion that when the British arrived in 1788 Australia was empty and that there was no one on the land (Marks 2002). If one has come to the conclusion that there was no one on the land then nothing prevents one from doing whatever is necessary to destroy anyone on the land who seeks to challenge this notion. And so, over the years, the Aboriginal populations were decimated by the settlers. It was not until 1992 that a court verdict rejected the idea that Australia had been terra nullius (Marks 2002). By 2002 there were no indications that there was any greater respect for Aboriginal rights. As Marks (2002) points out, “One of Howard's first acts on assuming power in 1996 was to slash the budget of the Aboriginal and Torres Strait Islander Commission, the country's main indigenous organisation. The following year, he watered down land rights by amending Keating's legislation. He has yet to respond meaningfully to recommendations made in 2000 by a statutory committee that spent 10 years mapping a route towards reconciliation” (Marks 2002). Australia also has had its own “Tuskegee” in the form of the so-called Stolen Generation of Aboriginal children who were taken away from their families between 1900 and 1970. The policy of removing Aboriginal children from their cultural and family environments were not meant to improve the welfare of Aboriginals but to destroy it, something that could happen only in the face of total lack of respect for the life and well-being of Aboriginals. Which raises the question as to whether in today’s world public health officials in Australia ought to be able to freely conduct research among Aboriginals. Though in 1999 the Australian parliament expressed regret for mainstream Australia’s treatment of Aborigines suspicions linger in the same way that suspicions linger among African-Americans when they deal with mainstream institutions in the United States. But the need for research into Aboriginal health has never been greater. “Numbering more than 350,000 in a population of 19 million, Australia's indigenous people are its most disadvantaged group. Their life expectancy is up to 20 years shorter than whites, they are beset by higher rates of preventable diseases and infant mortality and have higher rates of illiteracy, alcoholism and drug abuse” (Australia expresses regret for its treatment of Aborigines 1999). A recent effort to improve the health of Aboriginal children, rather than sparking hope among Australia’s Aborigines might actually have fueled questions about whether the government is up to some of its old tricks again. In the so-called 0-5 Program, which is a public health initiative, Aboriginal children are weighed, measured, assessed, and immunized. While the program was hailed as an important cornerstone for improving Aboriginal health questions are beginning to be raised. “Remote area nurses and their medical and Aboriginal health worker colleagues in the Tanami desert region of Western Australia have been asking this question and are finding the answer is not clear cut. While a lot of weighing, measuring and assessing has taken place, there has been little improvement in the health of Aboriginal children in that age group, with many continuing to have significant weight loss or levelling out of weight at weaning.” (Ellis 2004). In fact, research indicates that by age 10, as many as 40% of Aboriginal children will have had a chronic suppurative ear infection that causes hearing loss. Moreover, 20% will have got trachoma while between 10 and 15% will have suffered from malnutrition with a further 30% having anemia and many others suffering what has been considered the highest rate of acute rheumatic heart disease in the world (Ellis 2004). While there is no indication that the public health service of Australia is engaging in any untoward activities toward the Aboriginals it must not be forgotten that the Tuskegee study did not come to light until after 40 years; and while the government might not be deliberately harming Aboriginals there are those who wonder if the government may be withholding proper cures from Aboriginals in the same way that the Tuskegee researchers withheld potentially lifesaving medication from their African-American subjects. At least, if the government is not guilty of any of these insinuations it is no secret that, “Socio-economic status has a well documented impact on well being” (Ellis 2004) and that making some genuine efforts to improve the lives of Aboriginals will translate into better health. The government’s lack of effort in improving the poor socioeconomic circumstances of Aborigines adds fuel to the fire of conspiracy that if Aborigines were not wanted on their own land 100 years ago the situation has not much changed. In fact, those with a long memory will recall that in 1991, a Royal Commission was set up in Australia to look into the jail deaths of 99 Aborigines stretching over a nine-year period. While the Royal Commission had scathing words for Australia in its treatment of Aboriginals there were further words from a delegation of the World Council of Churches to Australia which declared that Australian treatment of Aborigines was "not just horrific, but genocidal" (Australians Confront Poor Treatment of Aborigines 1991). Among the 339 recommendations made by the Royal Commission were the need to eliminate racist attitudes and practices. “To the Aborigine, the biggest reminder of this disadvantage is incarceration. According to the Royal Commission report, Aborigines are 29 times more likely to be incarcerated than non-Aborigines. Frequently they are jailed for minor offenses. And, when in jail, they are more likely to commit suicide or be killed by guards than non-Aborigines” (Australians Confront Poor Treatment of Aborigines 1991). Once again, is this a case of some lives being more valued than others? The candour of the Commission was lauded by some Aboriginal leaders who saw in the document a chance for change. "This report should bring home to the Australian people how the most disadvantaged group in the community has been brutally and violently treated. The findings depict a society where racist attitudes and behavior have become institutionalized throughout the system, particularly in the law, education, and welfare systems," says Sol Bellear, the acting chairman of the Aboriginal and Torres Strait Islander Commission” (Australians Confront Poor Treatment of Aborigines 1991). How, in the face of such distrust and possibly lingering resentment, can Australian public health officials have the audacity to conduct research among Aborigines even if the stated intention is to benefit Aborigines? In the current climate, the truth of the matter is that Aboriginals cannot trust Australian public officials and that if there is going to be any fruitful opportunities for researching Aborigines and their health issues it should come from respectful collaboration. Before Europeans came to Australia the Aborigines were alive and well. They did not have access to the marvels of Western medicine but they were not ignorant of how to survive in the harsh Australian outback. Many of the health problems facing Aboriginals, whether in the case of alcohol, incarceration, or teenage pregnancy, are all remnants of the legacy of the practices of the Australian government over the years. Even a sincere apology from the Australian government and some effort towards showing the Aborigines respect through an improvement in their economic conditions might signify the first steps in building trust between the two groups. Though the government of Australia makes one lukewarm effort after another, researchers, especially those who truly care about the health of Aborigines might be pulling their hair out wondering what they could do, not tomorrow, but now, to better understand Aborigines and thus do what might result in measurable improvements in Aboriginal health. In order for public health into Aboriginal health to be acceptable it must be rooted in ethics and be localized. Stephen Leeder, a researcher, captures the extent of distrust with public health officials in the following comment: “Four years ago, I served briefly on an NHMRC committee concerned with establishing standards and competences for education of local Aboriginal health workers. I was vetoed by the largely Indigenous group because when asked about my background and professional interests I mentioned public health” (Leeder 1998). Why? The answer is simple. To the Aboriginals who voted against Mr Leeder, “public health was associated with white-dominated efforts to control infectious disease, and not far removed from the paternalistic error of those who took Aboriginal children from their homes and about whom much has been written and said” (Leeder 1998). There are also indications that there are some people at the very top of government institutions who have no love for Aboriginals. As Leeder tells it some of the feelings expressed in high places include the following: “So what if their life expectancy was 20 years less than that of white Australians? What would you expect? `They live among dogs, you know', one especially unpleasant parliamentarian told our group, and laughed” (Leeder 1998). Any possible success at delving into the health issues of Aboriginals has to start with Aboriginals and their connection to the land, their respect of elders, and their respect of consensus. In other words, rather than dictating to them from “on high” they should be consulted and made to understand that they do matter. Amidst the doom and gloom there are some glimmers of hope that the government can be engaged in the health issues of Aboriginals. After all, many of the problems that Aboriginals faced, as far back as the 1970s such as malnutrition, infectious diseases, poor sanitation and social disintegration are still present and need to be dealt with somehow. With this in mind, participatory action research is seen by some researchers as the key to solving the trust issue in research involving Aboriginals. In one particular case, the Aboriginal health worker program, a Federal Government initiative, Aboriginals themselves serve as ”the point of entry for Aboriginal communities into the western health system and represent the needs of their people at a personal and community level, while acting as the mediators between western and traditional medical systems.7 In 1993 the South Australian Health Commission stated that: The key health provider (in Aboriginal health services) is the Aboriginal health worker complemented by nurses and doctors (p. 15)” (cited in Heckler 1997). As long as the Aboriginal workers retain the trust of their respective communities then it should be possible to gather whatever information is necessary and to execute whatever health measures that are seen to be in the interests of the Aboriginals. If this system, however, is abused, or that the Aboriginal health workers are seen as pawns then the problem goes back to square one. Such a system involving Aboriginals can go some way towards countering the traditional image of the Aboriginal researcher. As Heckler (1997) writes, “Research in Aboriginal health has received criticism in a number of ways. It has been asserted, for example, that Aboriginal communities have been subjected to researchers who fly into their communities, conduct research on their people and fly out again with the results under their arms” (Heckler 1997). Such a system was utterly lacking in respect, which is why in 1991, the National Health and Medical Research Council presented guidelines by which researchers could get those who were subject to research to have some ownership of the research. In 1992 the governments of Australia, at the Commonweatlh, state and territorial levels made a recommendation that Aboriginal health workers be given training in research skills so that they could undertake research within their communities” (Heckler 1997). Such a recommendation, however, is only a band aid. There are many mainstream researchers with top notch skills whose expertise could benefit Aboriginals. Because of a lack of trust such individuals might not have the chance to operate in Aboriginal communities. If Australia wants to pursue such a course it could also invite United Nations observers whenever someone in the mainstream goes into an Aboriginal community to conduct research. But will such solutions be lasting? No, the Australian government and the Australian people need to see in their Aboriginal cousins the face of humanity and endeavour to treat Aboriginals the same way that they treat their family members. If Australians would not allow whites to live in squalid conditions then they should do whatever is necessary to ameliorate the conditions of Aboriginals. Aboriginals are hurt from being robbed of their land and their trust in their fellow human beings. When some part of such trust is restored any public health official should feel free to do research among Aboriginals under generally accepted ethical guidelines. Under conditions of trust the Aboriginals would also mainstream researchers in their communities not as potential dealers of death but their fellow brothers and sisters who would not knowingly harm them. Such a time, however, judging from recent events, is still far off. For the moment then, it would be the course of wisdom if outside observers, who are neutral, or advocates of Aboriginal rights and safety, get to observe any research going on in Aboriginal communities. Meanwhile, the consent of Aboriginals and full ethical considerations MUST be observed. There ought never be another Tuskegee, not in America, and not in Australia! Bibliography “Australians Confront Poor Treatment of Aborigines.” Christian Science Monitor (May 22, 1991). “Australia expresses regret for its treatment of Aborigines.” Associated Press/Las Vegas Review – Journal (Aug 27, 1999):19A. Ellis, Isabelle. “Improving health of Indigenous children.” Australian Nursing Journal, Vol. 11 Issue 9 (Apr 2004):37. Heckler, Rosalind. “Participatory action research as a strategy for empowering Aboriginal health workers.” Australian and New Zealand Journal of Public Health, Vol. 21 Issue 7 (Dec 1997):784. Leeder, Stephen R. “Commitment to improving Indigenous health.” Australian and New Zealand Journal of Public Health, Vol. 22 Issue 6 (Oct 1998):635. Marks, Kathy. “Australia marches backwards on its Aborigine rights.” The Independent (Jun 4, 2002):11. “Remembering Tuskegee: Syphilis Study Still Provokes Disbelief, Sadness” July 25, 2002 http://www.npr.org/programs/morning/features/2002/jul/tuskegee/index.html (October 7, 2006) White, Robert M. “Misinformation and Misbeliefs in the Tuskegee Study of Untreated Syphilis Fuel Mistrust in the Healthcare System.” Journal of the National Medical Association, Vol. 97 Issue 11 (Nov 2005):1566. Read More