Volume 175 Issue 7

Research Mega-dose vitamin C in treatment of the common cold: a randomised controlled trial Carmen Audera, Roger V Patulny, Beate H Sander and Robert M Douglas MJA 2001; 175: 359-362 Abstract - Methods - Results - Discussion - Acknowledgements - Competing interests - Reference - Authors' details - - - More articles on Infectious diseases and parasitology Abstract Objective: To determine the effect of large doses of vitamin C in the treatment of the common cold. Study design: Double-blind, randomised clinical trial with four intervention arms: vitamin C at daily doses of 0.03 g ("placebo"), 1 g, 3 g, or 3 g with additives ("Bio-C") taken at onset of a cold and for the following two days. Participants and setting: 400 healthy volunteers were recruited from staff and students of the Australian National University, Canberra, ACT, between May 1998 and November 1999. The trial continued for 18 months. Interventions: Participants were instructed to commence medication when they had experienced early symptoms of a cold for four hours, and to record daily their symptoms, severity, doctor visits and use of other medications. Main outcome measures: Duration of symptoms and cold episodes; cumulative symptom severity scores after 7, 14 and 28 days; doctor visits; and whether participants guessed which medication they were taking. Results: 149 participants returned records for 184 cold episodes. No significant differences were observed in any measure of cold duration or severity between the four medication groups. Although differences were not significant, the placebo group had the shortest duration of nasal, systemic and overall symptoms, and the lowest mean severity score at 14 days, and the second lowest at 7 and 28 days. Conclusions: Doses of vitamin C in excess of 1g daily taken shortly after onset of a cold did not reduce the duration or severity of cold symptoms in healthy adult volunteers when compared with a vitamin C dose less than the minimum recommended daily intake. A recent Cochrane systematic review of the effects of vitamin C on the common cold concluded that large maintenance doses of vitamin C do not lower the incidence of colds in well-nourished subjects in Western countries.1 Nevertheless, the meta-analysis of 17 trials found that prophylactic doses of at least 1g per day were associated with a statistically significant weighted mean reduction in symptom days of about 0.45 days per cold (9% of symptom days).1 However, the authors of the Cochrane review could not draw conclusions about the therapeutic effects of vitamin C (ie, effects when taken at onset of a cold).1 Findings of four well-conducted trials of the effects of treating colds with a loading dose of vitamin C were inconclusive2-5(Box 1). This prompted us to design a study to answer the question "Would vitamin C, when used exclusively as a therapeutic agent in doses that greatly exceed the required daily intake, reduce the duration or severity of symptoms of the common cold in healthy Australian adults?". Methods Our study was a double-blind, randomised trial comparing the effects of different doses and formulations of vitamin C. We chose as "placebo" a dose of 0.03g per day of vitamin C (about half the recommended minimum daily intake), recognising that all participants would have some nutritional vitamin C intake. Ethics approval was obtained from the Human Ethics Committee of the Australian National University, Canberra. Participants Staff and students of the Australian National University, Canberra, ACT, were recruited between May 1998 and November 1999 through personal letters and emails, announcements at student gatherings and direct approach in university common areas. Volunteers were eligible for the study if they were aged over 18 years, not pregnant or planning to become pregnant, in good general health, and did not take vitamin supplements regularly or take vitamin C, echinacea, zinc or Chinese herbal preparations regularly at the onset of a cold. Volunteers were clearly informed about the objectives of the study and signed an informed consent form. They also completed a questionnaire about their current health and medication status, including respiratory infections in the previous year. An information letter was provided for their general practitioners. Participants who returned information on one respiratory event were eligible to re-enrol in the study. Interventions Participants were randomised to receive one of four interventions: vitamin C in a daily dose of 0.03 g, 1 g or 3 g, or "Bio-C" (containing vitamin C [3 g daily] plus bioflavenoids [75 mg], rutin [150 mg], hisperidin [150 mg], rose hip extract [750 mg] and acerola [150 mg]). They were to take the medication at onset of cold symptoms and on the following two days. The medications were prepared by Blackmores Ltd (Sydney, NSW) as compressed tablets with identical appearance and packaging. Dosage was confirmed by chemical analysis of unused tablets at the end of the study. A random number table was constructed to order the medications sequentially so that each sequence of four numbers comprised all four types of medication. The medications were issued to investigators in 400 sequentially numbered sets of three bottles, each bottle containing the daily dose in three tablets. As volunteers joined the study they were given a set of three bottles and a correspondingly numbered "respiratory event card" to record outcome. The code was retained by the manufacturer until we were ready to analyse the results. Participants were instructed that they must have at least two of the following symptoms for a minimum of four hours before commencing medication: sore or scratchy throat, nasal congestion or discharge, headache or stinging eyes, muscle aches, fever, or "four hours of certainty that a cold is coming on". On the first day of illness, they were to take the contents of one bottle (three tablets) as soon as possible. For the next two days, they were to take three tablets a day at intervals of at least four hours. Outcome measures The respiratory event card was designed to be carried in a wallet or purse. When a cold began, participants were instructed to score symptoms daily, noting presence and severity (1, mild; 2, moderate; or 3, severe) of cough, nasal, throat, and systemic symptoms, including fever, headache, aches, feeling unwell and "other symptoms". Recording was to cease either when all symptoms disappeared or 28 days after onset of the cold. Participants were also instructed to record hours between onset of symptoms and first dose of medication, use of other medication and whether they sought medical attention. They were also invited to guess to which medication group they had been assigned. Duration of the cold was measured from day of symptom onset to the last day of any symptom. Cold severity scores were the sum of daily individual symptom scores throughout the duration of the cold. Symptom days and severity scores for cough, nasal, throat and systemic symptoms were considered separately, and cumulative scores were considered at 7, 14, and 28 days. For any one day of symptoms, the maximum severity score was 12. Participants who did not return a respiratory event card were sent reminder letters after nine months and 15 months. The initial 12-month study period was extended by six months in an effort to increase the response rate. Statistical analysis We aimed to study 75 individuals in each intervention arm, in the expectation that the study would have an 80% power to detect a 30% difference between groups in duration or severity, which we considered clinically significant. Desired sample size was calculated assuming a mean duration of seven days and a standard deviation of four days. Statistical comparisons were carried out using the software package SPSS.6 Distribution, mean and median of duration and severity scores for each symptom were compared between the four groups by t-tests, analysis of variance and box plots. Results Study population Four hundred sets of medication were distributed to 323 volunteers. By November 1999, when the study was terminated, 149 people had returned completed respiratory event cards for 184 cold episodes. These 149 were significantly older than those who did not return cards (45.1 versus 40.9 years; P < 0.05), but the two groups did not differ significantly in sex distribution or previous cold history. Personal characteristics and previous cold history of those who returned cards are shown in Box 2, along with time from symptom onset to beginning medication. Participants in the four medication groups were comparable in sex distribution and time to beginning medication, but those who took Bio C were significantly older and had fewer colds in the previous year than those in the other three groups (P < 0.05). Cold duration and severity Duration and severity of symptoms are compared between the four medication groups in Box 2. There were no significant differences between the groups in either mean duration of symptoms or mean severity scores at Days 7, 14 or 28, although the placebo group (30 mg vitamin C daily) had the shortest duration of nasal, systemic and overall symptoms, and the lowest mean severity score at 14 days, and the second lowest at 7 and 28 days. A box plot of cumulative severity scores at Day 28 (Box 3) revealed that the distribution of values was more dispersed in the 1 g and 3 g vitamin C groups, with the lowest median values occurring in the placebo and Bio C groups. A box plot of cold duration showed a similar pattern (Box 3). Only 31 participants (17%) recorded a guess about the dose of vitamin C they had taken, and 14 guessed correctly that they had taken a high dose. Seventeen gussed incorrectly that they had taken either a high or low dose. Actual power of the study Because the mean cold duration for the whole group was 9.8 days with a standard deviation of 6.6 days, the number of completed cold episodes returned per group provided 80% power to detect a 40% difference in cold duration with a 95% level of confidence. Similarly, given that the mean severity score at Day 28 was 32 with a standard deviation of 32.3, the number of completed cold episodes provided 80% power to detect a 50% difference in severity at the 95% level of confidence. Discussion Our study found no significant differences in severity or duration of cold symptoms between groups who took low-dose (placebo) and high-dose vitamin C as treatment for the common cold. The lack of benefit from high-dose therapeutic vitamin C is consistent with the findings of four other randomised controlled trials2-5 (Box 1). The Cochrane and other reviews of the published evidence on high-dose vitamin C and the common cold have drawn attention to the relatively consistent trend for those taking prophylactic doses in excess of 1 g daily to experience some reduction in duration or severity of colds.1,7-9 Although high-dose prophylactic vitamin C was also found not to reduce the incidence of colds in well-nourished adult populations,1,7 Hemila has proposed that it may have an effect in groups who are physically stressed or have low nutritional intake.8-10 The main weakness of our study is that it necessarily relied on study participants to decide when the criteria for commencing medication were met and to provide all outcome data. In such a study, double-blindness must be rigorously preserved, and allocation to intervention arms must avoid selection bias. We are confident that our study met these requirements and that the few participants who correctly guessed their medication dose did so by chance. The focus on the university community meant a potential bias in socioeconomic and educational status of participants. The observed spectrum of cold experience may not have been representative of the cold experience of the rest of the Canberra community. Many potential volunteers in our study were ruled ineligible because of their regular use of vitamin C and other, non-traditional approaches for cold therapy and prophylaxis. A recent US study found that 67% of patients seeking medical care for cold episodes believed that vitamin C reduces cold symptoms.11 Our target of 75 colds in each treatment group was not reached, despite extension of the study and repeated reminder letters to participants. Fewer than half those enrolled returned a completed respiratory event card. As we expected most to suffer at least one cold during the 18 months of the study, based on their previous history, we assume that many did not use the medication as instructed. Although those who completed a respiratory event card were older than those who did not, both groups had similar previous cold experience. The double-blind nature of the study makes it unlikely that greater compliance would have changed the result. Our study had medication groups of comparable size, and for each medication group colds were found to have occurred across the entire study period. The Bio-C group was slightly older than the other groups and, probably in consequence, experienced fewer colds in the previous year, as the incidence of colds tends to decrease with age. However, these differences were not associated with significant differences in outcomes. The average time between symptom onset and medication use was 13 hours, although we encouraged participants to begin medication as soon as four hours after they were certain that a cold was developing. However, the time to beginning medication did not differ significantly between groups. The power of our study to detect a possible significant difference in symptom severity and duration after high-dose vitamin C treatment was limited by the smaller than expected participation rate. However, the non-significant trend that was observed was the reverse: symptoms tended to be less severe and of shorter duration in the placebo group. The lack of observed benefit in this trial is fully consistent with the observations from the four previous randomised controlled trials that have sought to evaluate this issue.2-5 It is time to question again the wisdom and utility of the wide practice of well nourished adults taking mega-doses of vitamin C to treat the common cold, a practice which has become prevalent worldwide since the advocacy of Linus Pauling in the early 1970s.12,13 Acknowledgements The project was supported by a grant from Blackmores Ltd, who also provided the study medications. We thank all those who participated in the study for their patience and compliance. Competing interests Blackmores Ltd were not involved in conduct or analysis of the trial or preparation of this article. References Douglas RM, Chalker EB, Treacy B. Vitamin C for preventing and treating the common cold (Cochrane Review). In: The Cochrane Library, 3, 2001. Oxford: Update Software. Anderson TN, Suranyi B, Beaton GW. The effect on winter illness of large doses of vitamin C. Can Med Assoc J 1974; 111: 31-38. Karlowski TR, Chalmers TC, Frenkel LD, et al. Ascorbic acid for the common cold. A prophylactic and therapeutic trial. JAMA 1975; 231: 1038-1042. Elwood PC, Hughes SJ, St Leger AS. A randomized controlled trial of the therapeutic effect of vitamin C in the common cold. Practitioner 1977; 218: 133-137. Tyrrell DA, Craig JW, Meada TW, White T. A trial of ascorbic acid in the treatment of the common cold. Br J Prev Soc Med 1977; 31: 189-191. SPSS [computer program]. Version 10.0 for Windows. Chicago, Ill: SPSS Inc, 1999. Hemila H. Vitamin C and the common cold. Br J Nutr 1992; 31: 3-16. Hemila H. Vitamin C supplementation and the common cold: was Linus Pauling right or wrong? Int J Vitam Nutr Res 1997; 67: 329-325. Hemila H. Vitamin C and common cold incidence: A review of studies with subjects under heavy physical stress. Int J Sports Med 1996; 17: 379-383. Hemila H, Douglas RM. Vitamin C and acute respiratory infections. Int J Tuberc Lung Dis 1999; 3: 756-761. Braun BL, Fowles JB, Solberg L, et al. Patient beliefs about the characteristics, causes, and care of the common cold: an update. J Fam Pract 2000; 49: 153-156. Pauling L. The significance of the evidence about ascorbic acid and the common cold. Proc Natl Acad Sci USA 1971; 68: 2678-2681. Pauling L. Vitamin C, the common cold, and the flu. San Francisco: Freeman, 1976. Authors' details National Centre for Epidemiology and Population Health, Australian National University, Canberra, ACT. Carmen Audera, MD, MPH, Lecturer; Roger V Patulny, BEc, BA (Hons), Research Assistant; Beate H Sander, BAppSc (Nursing), MEcDev, Research Assistant; Robert M Douglas, MD, FRACP, FAFPHM, Visiting Fellow. Reprints will not be available from the authors. Correspondence: Emeritus Professor R M Douglas, National Centre for Epidemiology and Population Health, Australian National University, Canberra, ACT 0200. Bob. DouglasATanu.edu.au Make a comment 1: Previous randomised controlled trials of the therapeutic effect of high-dose vitamin C on cold symptoms Study Participants and setting Interventions Outcomes Anderson et al2 (1974) Toronto, Canada Hospital and business employees (>275 per arm) 4 arms: 2 placebo, 2 therapeutic (4g or 8g vitamin C taken on day of symptom onset) The two placebo arms unfortunately differed in outcome. Mean days of respiratory symptoms over 3 months: placebo, 5.4 and 4.16 days (combined placebo mean, 4.77 days); intervention, 4.82 days (4g dose) and 4.52 days (8g) Karlowski et al3 (1975) Bethesda, USA National Institutes of Health employees (46 placebo, 43 therapy) 3g vitamin C daily or placebo for the first 5 days of a cold Problem in blinding, as over half the participants correctly guessed their medication through taste. Although mean duration of colds was longer in the placebo than therapy group (7.1 v 6.5 days), difference was confined to those who guessed their medication ("unblinded"). Unblinded group: 8.6 (placebo) v 4.7 days (therapy); blinded group: 6.3 (placebo) versus 6.7 days (therapy). Elwood et al,4 (1977) South Wales, UK Community volunteers (119 placebo, 145 therapy) 3g vitamin C daily or placebo for 3 days Vitamin C significantly reduced duration of "simple" colds in men (5.7 days [placebo] v 3.97 days [therapy]), but had no benefit in women (4.97 days [placebo] v 6.05 [therapy]), or in "chest" colds in either sex. Tyrrell et al5 (1977) Salisbury, UK 482 volunteers 4g of vitamin C or an identical-tasting placebo daily for 2.5 days No evidence that vitamin C alleviated or shortened upper respiratory or general constitutional symptoms. Back to text 2: Characteristics of participants and outcomes of a study of the effect of therapeutic vitamin C on the common cold Vitamin C formulation (daily dose) 0.03g (n=42)* 1g (n=47)* 3g (n=50)* Participant characteristics Mean age in years (95% CI) 38.6 (34.2-43.0) 40.1 (35.8-44.4) 39.9 (36.2-43.6) Male sex (95% CI) 45% (30%-61%) 38% (26%-54%) 50% (36%-65%) Cold history in previous year Mean number of colds (95% CI) 2.2 (1.7-2.7) (n=40) 2.25 (1.9-2.6) (n=46) 2.2 (1.8-2.7) (n=49) Mean number of days unwell from colds (95% CI) 8.0 (3.4-12.5) (n=39) 7.7 (6.2-9.3) (n=46) 7.7 (6.5-9.2) (n=49) Mean hours from symptom onset to medication (95% CI) 13.3 (9.4-17.2) (n=39) 11.6 (8.7-14.7) (n=44) 10.2 (8.2-12.3) (n=48) Outcome measures Mean days of symptom (95% CI) 8.5 (6.6-10.5) 10.1 (8.1-12.1) 10.4 (8.5-12.2) Cough 5.3 (3.0-7.6) 6.4 (4.1-8.6) 6.3 (4.4-8.3) Nasal symptoms 7.3 (5.4-9.1) 8.4 (6.7-10.1) 9.2 (7.4-11.1) Throat symptoms 5.4 (3.6-7.2) 6.1 (4.3-7.9) 6.3 (4.6-7.9) Systemic symptoms 3.5 (2.1-4.9) 3.7 (2.3-5.2) 3.8 (2.7-4.8) Mean severity score‡ (95% CI) Day 7 20.2 (16.5-24.0) 22.1 (18.1-26.0) 23.0 (19.3-26.6) Day 14 25.6 (19.0-32.1) 31.1 (23.5-38.8) 30.8 (24.9-36.6) Day 28 29.0 (19.5-38.6) 35.4 (23.4-47.5) 34.3 (26.6-42.1) Doctor visit (95% CI) 7% (2%-20%) 19% (8%-31%) 4% (0.5%-14%) Other medication taken for symptoms (95% CI) 57% (41%-72%) 55% (40%-70%) 55% (39%-68%) Vitamin C formulation (daily dose) "Bio C" (3g plus additives) (n=45)* Total (n=184)* Participant characteristics Mean age in years (95% CI) 45.1 (40.6-49.5)† 40.9 (38.8-43.0) Male sex (95% CI) 51% (36%-66%) 46% (39%-54%) Cold history in previous year Mean number of colds (95% CI) 1.5 (1.3-1.8)† (n=44) 2.1 (1.9-2.3) (n=179) Mean number of days unwell from colds (95% CI) 6.8 (5.4-8.2) (n=43) 7.5 (6.4-8.9) (n=177) Mean hours from symptom onset to medication (95% CI) 18.6 (11.2-26) (n=44) 13.4 (11.1-15.8) (n=175) Outcome measures Mean days of symptom (95% CI) 9.9 (7.9-11.9) 9.8 (8.8-10.7) Cough 4.4 (2.2-6.5) 5.6 (4.6-6.7) Nasal symptoms 8.1 (6.1-10.1) 8.3 (7.4-9.2) Throat symptoms 5.4 (3.8-6.9) 5.8 (5.0-6.7) Systemic symptoms 4.4 (3.2-5.6) 3.9 (3.2-4.5) Mean severity score‡ (95% CI) Day 7 19.2 (15.4-23.0) 21.2 (19.3-23.0) Day 14 25.9 (19.1-32.6) 28.5 (25.2-32.8) Day 28 28.6 (20.0-37.3) 32.0 (27.3-36.7) Doctor visit (95% CI) 9% (3%-21%) 9% (6%-14%) Other medication taken for symptoms (95% CI) 53% (38%-68%) 55% (47%-62%) *Number of completed cold episodes; 35 participants were counted twice, as they reported two medicated colds. For variables with missing data, numbers of participants who provided information are shown in parentheses. †P Back to text 3: Box plots of cold severity and duration in groups taking different vitamin C formulations Back to text

Carmen Audera · Roger V Patulny · Beate H Sander · Robert M Douglas

Indigenous Health Household infrastructure in Aboriginal communities and the implications for health improvement Ross S Bailie and Myfanwy J Runcie MJA 2001; 175: 363-366 Abstract - Methods - Results - Discussion - Competing Interests - Acknowledgements - References - Authors' details - - - More articles on Aboriginal health Abstract Objective: To evaluate housing survey data, describe the state of household infrastructure in Aboriginal communities in the Northern Territory (NT), and to discuss implications for health improvement for people in these communities. Design: Quantitative analysis of survey data and qualitative analysis of the survey process. Setting: All NT houses funded for repairs and maintenance through the Indigenous Housing Authority of the Northern Territory (IHANT). Main outcome measure: Status of infrastructure necessary for four key "healthy living practices" (washing people, washing clothes and bedding, waste removal, and food storage and preparation). Results: 3906 houses (79% of all houses funded by IHANT) were surveyed. Infrastructure components most frequently identified as not functional or not present were those required for the storage and preparation of food (62% not functional). The facilities required for personal hygiene and safe removal of human waste were not functional in 45%-46% of houses. Conclusions: These findings highlight the significance of absent or non-functioning household infrastructure as a potential contributory factor in the poor nutritional status and high rates of respiratory, skin and gastrointestinal infections in Indigenous communities. The environmental health and housing survey in the NT is an important tool for monitoring progress on addressing a key underlying determinant of the health of Indigenous people, and potentially for facilitating research aimed at gaining an improved understanding of the relationship of the household environment to health in Indigenous communities. The most significant improvements in health in industrialised countries over the past two centuries have been attributed to improvements in living and working conditions. Adequate and safe water supply, sanitation, housing, nutritious food, waste disposal, drainage and crowding have all been shown to influence health.1,2 A number of Australian studies have described the inadequacy of housing and the association between the poor living environment and poor health in the Indigenous population.3-6The National Aboriginal Health Strategy, through the establishment of the Health Infrastructure Priorities Projects in 1993 and 1994 and the Environmental Health Program in 1996, provided for large-scale infrastructure development in communities where this would have maximal impact on health. Projects included ensuring adequate water supply, sanitation, housing and drainage, providing internal roads, and dust management.7 The Indigenous Housing Authority of the Northern Territory (IHANT) was established to ensure a coherent housing strategy, with a specific mandate to facilitate planning and allocation of housing programs and to increase Aboriginal consultation, self-determination and self-management. The NT Government Environmental Health Task Group has published Environmental Health Standards for remote communities in the NT that define a minimum set of functional components of household infrastructure for the building and maintenance of houses.8 These standards are based in part on work done in central Australia by the HealthHabitat group in defining a set of "healthy living practices". As the program manager for IHANT, the NT Department of Local Government introduced an annual Environmental Health Survey (EHS) in 1998. Important points in the background to the survey are presented in Box 1. The Menzies School of Health Research was contracted to evaluate the first round of survey data, with a view to advising on improvement in the conduct of the survey and reporting on the current status of housing in the NT.9 We report the findings of this evaluation. Methods The survey methods are described in detail in the survey evaluation report.9Briefly, the survey aimed to cover all houses funded by IHANT, and included all communities in the NT, including remote settlements and communities near or within the boundaries of towns and major centres. Surveys were conducted primarily by environmental health officers of Territory Health Services or community development officers of the Department of Local Government. A number of surveys were also conducted by Aboriginal environmental health workers or other community workers under the direction of the environmental health officers and community development officers, with the intention of ultimately handing over responsibility for the survey to community housing organisations. The survey form included components of infrastructure specified as essential in the Environmental Health Standards,8 with each component scored according to its presence or absence, and, if present, its condition and the level of maintenance required to render it fully functional. The data were entered into a database managed by the Department of Local Government. Evaluation and data analysis The design and conduct of the survey were examined through documentary evidence (held by the Department of Local Government); interviews with the project manager, field officers and database operators; and examination of the database. The data within the database were checked for data entry errors and completeness. Errors were corrected and a subset of the data containing observations for houses with entries in most data fields was downloaded and analysed using SPSS statistical software.10The proportions of houses for which each infrastructure component specified on the survey form was adequately functional (required no or minor repairs only), was not functional (required major repairs or replacement), was not present or for which data on that component were missing were calculated. Of the nine healthy living practices described by Pholeros et al,4 four that are directly dependent on components of household infrastructure examined in this survey were identified. These were washing people, washing clothes and bedding, waste removal, and food storage and preparation. A set of infrastructure components required to allow the effective conduct of each of these four healthy living practices was defined, and the four healthy living practices were expanded to six for the purpose of the analysis, as shown in Box 2. The proportion of houses which had all the infrastructure components required for each practice recorded as functioning was calculated, both overall and for individual communities with 10 or more houses included in the survey. Ethical approval This article is based on data collected primarily for the purposes of housing management and planning rather than for research. No individuals or communities are identified, so there are no issues relating to confidentiality or privacy that require ethical approval for publication. Results Complete data were recorded for 3906 (79%) of a total 4936 houses funded by IHANT. A number of inadequacies in survey conduct and quality control were found. These stemmed primarily from a lack of or inadequate protocols for the conduct of the survey and from inadequate training of surveyors. These inadequacies resulted in inconsistencies in identifying the most appropriate respondent for the survey, and in questioning, inspection and testing of infrastructure components, and may have restricted the survey coverage.9 The components of infrastructure most frequently identified as not functional or not present were the kitchen bench, the stove top and the oven (26%, 41%, and 42%, respectively) (Box 3). The cold water taps and supply to the kitchen sink, shower and laundry were clearly identified as functional in between 76% and 81% of houses. In the bathroom, 30% of houses were identified as having no functioning cold water taps, and 32% as having no functional basin. Hot water taps were functional in the laundry in 68% of houses, and in the shower in 74%. However, the hot water service was functional in only 62% of houses, not functional in 11% of houses and absent altogether in 14%. Electricity supply to switches, power points and lights was functional in different rooms for 72%-79% of houses. Between 63% and 78% of houses had the general structure of the kitchen, laundry, bathroom, bedroom, main toilet, exterior doors and windows and house exterior recorded as functional and not a threat to safety. The general structure was least commonly identified as functional or safe in kitchens. Forty-two per cent of houses were clearly identified as having a functioning refrigerator, 19% had functioning air-conditioning or evaporative cooling and 41% had a functioning washing machine. Thirty-three per cent had a functional fence around the boundary. The proportion of surveyed houses for which the components required to effectively conduct each of the six key "healthy living practices" ranged between 38% and 69%. Those components required for preparing and storing food were least likely to all be in a functional state and those required for removal of rubbish were most likely to be available (Box 2). The proportion of houses that had functioning infrastructure for conducting each of the healthy living practices varied widely between communities. In some communities, and for some healthy living practices, none of the surveyed houses had the required infrastructure functioning, whereas in other communities all of the surveyed houses had the required infrastructure functioning (Box 2). In 13% of all communities where 10 or more houses were surveyed, more than 50% of surveyed houses had the functional amenities to allow all six of the key healthy living practices (Box 4). In 44% of communities 50% of surveyed houses had functional infrastructure components necessary for three or less of the healthy living practices. Discussion Our analysis of the survey data describes for the first time the poor state of household infrastructure in Indigenous communities at a detailed level and across a wide jurisdiction. The findings confirm the poor state of housing previously described at a more localised level.4,5,11 Certain types of infrastructure are commonly in a poor state of repair, most notably the facilities for storage and preparation of food. This is of particular concern in light of the high rates of gastrointestinal infection, undernutrition and obesity in children and obesity in adults,12-14 the associated high rates of "lifestyle"-related disease among people living in these communities, and the now widely accepted evidence of the role of fetal nutrition in the development of chronic disease in adulthood.15 (We recognise that lifestyle is strongly determined by the social, cultural and physical environment.) The poor state of housing and access to adequate facilities for washing have been identified as key underlying factors in the high levels of morbidity and mortality from bacterial respiratory tract infections, and the significant contribution of such infections to the generally poor state of health of many Indigenous Australians.16 Providing sound household infrastructure is clearly important for improving the poor state of health among Indigenous people in Australia. The work of HealthHabitat in central Australia indicates that household infrastructure is used when it is available.4 However, providing a secure and good-quality food supply, and good hygienic and dietary behaviour, is also essential. Although there were concerns about the lack of quality control in the conduct of the survey between different communities and regions, the high level of coverage (it might more correctly be referred to as a census) and the consistency in coding items as not present and missing data across regions9 allay these concerns to some extent. Further, the findings need to be seen as representing the best-case scenario in the NT, as the survey was intended to target permanent dwellings only. An estimated 1000 temporary dwellings (caravans, tin sheds, improvised dwellings) occupied by close to 4000 people17 would not have been included in this survey. This suggests that the level of functional infrastructure reported in this survey overestimates the level for all dwellings in the NT by about 25%. Current infrastructure projects can be expected to contribute to improvements in health for the people they reach. However, projections indicate that, even with these projects, there will be significant unmet need for many years as population growth and aging housing stock tip the balance against the supply of new houses and repairs and maintenance to existing houses.18 Many more resources need to be committed if such projects are to influence health at the wider population level in the near future. The annual environmental health and housing survey introduced in the NT is an important tool for defining areas of greatest need, monitoring progress, and potentially for improving the understanding of the contribution of household infrastructure to a range of health, educational and social outcomes. Competing interests This article was based on an independent evaluation of a survey conducted under contract by the Menzies School of Health Research for the Northern Territory Department of Local Government. There was agreement at the start of the evaluation between the Department of Local Government and the evaluation team that the results of the evaluation could be the subject of articles published in the scientific literature. The authors have no conflict of interest in writing this article, and have not been subject to any undue influence. Opinions expressed are those of the authors and do not necessarily represent those of any employee of the NT Government. Acknowledgements Thanks to the Northern Territory Department of Local Government for its cooperation and funding of the work that led to this report. We acknowledge the decision of the Aboriginal Community Councils to agree to participate in the survey and the contribution of the many people involved in data collection and processing for the survey. We are grateful to a number of people for their cooperation in the survey evaluation, including Sallie Cairnduff, Graham Franklin, Steve Guthridge, Andrew Heath, Barbara Klessa, Esther Pearce, Phillipe Porigneaux, Danni Quickenden, Helen Secretary, Lynette Shields and Nicola Slaven. References Lindheim R, Syme SL. Environments, people and health. Ann Rev Public Health 1983; 4: 335-338. World Bank. World Development Report: Investing in health. New York: Oxford University Press, 1993. Nganampa Health Council Inc, South Australian Health Commission, Aboriginal Health Organisation of South Australia. Report of Uwankara Palyanku Kanyintjaku: an environmental and public health review within the Anangu Pitjantjatjara Lands. Adelaide: Nganampa Health Council, 1987. Pholeros P, Rainow S, Torzillo P. Housing for health: Towards a healthy living environment for Cape York Communities. Newport Beach: HealthHabitat; 1993. Pormpuraaw Community Council, Apunipima Cape York Health Council, Centre for Appropriate Technology, HealthHabitat. Pormpuraaw housing for health project report: Towards a healthy living environment for Cape York Communities. Cairns: Apunipima Cape York Health Council, 1997. Torzillo P, Kerr C. Contemporary issues in Aboriginal public health. In: Trompf P, Reid J, editors. The health of Aboriginal Australians. Sydney: Harcourt Brace & Co, 1997. Guthridge S, Cairnduff S, Gollow P, et al. Structure, function and health: a review of the health impact of infrastructure change in remote Aboriginal communities of the Top End — final draft. Darwin: Territory Health Services, 2000. Northern Territory Government Environmental Health Task Group. Environmental health standards for remote communities in the Northern Territory. Darwin: Northern Territory Government, 1998/1999. Runcie M, Bailie R. Evaluation of environmental health survey data — Indigenous housing. Darwin: Cooperative Research Centre for Aboriginal and Tropical Health, 2000. SPSS [computer program], version 10.0.5. Chicago: SPSS Inc, 1999. Hardy B. Ramingining Manymak Wanga project report. Darwin: Territory Health Services, 1998. Cunningham J, Makerras D. Overweight and obesity: Indigenous Australians. Canberra: Australian Bureau of Statistics, 1994. Ruben A, Walker A. Malnutrition among rural Aboriginal children in the Top End of the Northern Territory. Med J Aust 1995; 162: 400-403. Muller SM, Priestly JR, McComb JR. Malnutrition among rural Aboriginal children in the Top End of the Northern Territory. Med J Aust 1995; 163: 445. Harding JE. The nutritional basis of the fetal origins of adult disease. Int J Epidemiol 2001; 30: 15-23. Mathews JD. Historical, social and biological understanding is needed to improve Aboriginal health. Rec Adv Microbiol 1997; 5: 257-334. Housing and Infrastructure in Aboriginal and Torres Strait Islander communities. Canberra: Australian Bureau of Statistics, 1999. Strategic plan — 1996. Darwin: Indigenous Housing Authority of the Northern Territory, 1996. (Received 18 Apr, accepted 10 Aug, 2001) Authors' details Menzies School of Health Research and Flinders University Northern Territory Clinical School, Darwin, NT. Ross S Bailie, MB ChB, FAFPHM, Associate Professor of Public Health. CSIRO, Sustainable Ecosystems, Canberra, ACT. Myfanwy J Runcie, PhD, Research Scientist. Reprints will not be available from the authors. Correspondence: Professor R S Bailie, Flinders University Northern Territory Clinical School, PO Box 41096, Casuarina, NT 0811 ross.bailieATmenzies.edu.au Make a comment 1: Background to the housing survey The survey is the responsibility of the Indigenous Housing Authority of the Northern Territory (IHANT), the peak body for Indigenous housing issues in the NT. The two elected Zone Commissioners and seven elected Regional Chairs of the Aboriginal and Torres Strait Islander Commission (ATSIC) have a majority on the IHANT Board to ensure appropriate Indigenous representation. The housing survey's purpose is not just to document the condition of housing infrastructure, but to guide and monitor a substantial maintenance and building program. Feedback of information and developing capacity at local and regional levels are key strategies in the program. The survey aims to ensure the most appropriate use of funds and to improve health status. Back to text 2: Percentage of surveyed houses for which the infrastructure components required to effectively conduct each of six "healthy living practices" were functional Healthy living practice Infrastructure components % Functioning in all surveyed houses Median % functioning per community (range)* Wash people Shower hot tap; shower cold tap; shower drainage; bathroom basin; bathroom hot tap; bathroom cold tap 54% 41% (6%-95%) Wash clothes Laundry trough; laundry hot tap; laundry cold tap 68% 69% (14%-100%) Functioning toilet Main toilet pan; main toilet cistern; main toilet water supply; main toilet drainage 55% 58% (7%-95%) Remove waste water Shower drainage; main toilet drainage 61% 61% (9%-100%) Remove waste rubbish Rubbish bin 69% 72% (0-100%) Prepare and store food Kitchen cold tap; stove top; oven; dry place for food storage; kitchen bench 38% 33% (0-100%) *Includes only those communities where at least 10 houses were surveyed. Back to text 4: Funtionality ratings of 86 communities across the Northern Territory with 10 or more houses surveyed Back to text

Ross S Bailie · Myfanwy J Runcie

Indigenous Health Trachoma in Australia Hugh R Taylor Australia is the only developed country in the world where blinding trachoma still exists MJA 2001; 175: 371-372 Trachoma is a disease that has been with us from antiquity. It is discussed in ancient Egyptian texts written on papyrus and in even earlier writings from ancient China. Chronic infection with the trachoma organism, Chlamydia trachomatis, can lead to blindness. The disease came to prominence in Europe during the Napoleonic wars, when tens of thousands of British and French troops returned with trachoma after fighting in Egypt. It spread rapidly through the armies of Europe, where the troops lived in crowded and insanitary barracks. Most of all, trachoma was a disease of the urban slums. In Europe, as people left their relatively healthy rural homes they were crowded into the workhouses and tenements created by the Industrial Revolution. Personal and community hygiene fell to an all-time low and the prevalence of trachoma surged. Trachoma was rampant throughout Europe and North America in the 19th century. In addition to tuberculosis and typhus, trachoma was one of the diseases that would-be immigrants to the United States were examined for — if found to have trachoma, they were sent all the way back to Europe. The early European settlers of Australia brought trachoma with them. Whether the Australian Indigenous people had trachoma before colonisation is unclear, but it seems unlikely, as small groups of nomadic hunter-gatherers can maintain good hygiene. However, with the poor housing conditions of the early settlers, and with the heat, dirt and flies of Australia, trachoma (or "sandy blight" as it was often called) became widespread and well known. It even left its stamp on certain place names (eg, Sandy Blight Junction in the Western Desert and the Ophthalmia Ranges in the Western Australian Pilbara). However, by the beginning of the 20th century, hygiene and living conditions in our larger cities had started to improve. In 1901, one of my predecessors at the Eye and Ear Hospital in Melbourne stated he could no longer find cases of active trachoma from Melbourne to teach his students. Instead he had to find people who lived in the Goulburn or LaTrobe valleys in Victoria. But, even in rural Australia, trachoma was disappearing, and by the late 1930s sandy blight had essentially disappeared as most Australians moved into proper housing with separate beds, running water and adequate sewerage and rubbish removal. The same happened in other developed countries. In England, the trachoma schools and clinics closed before World War II, and the last trachoma hospitals in the United States closed just after the war. In the 1950s, trachoma also disappeared in Italy and the Soviet Union. Despite the disappearance of trachoma from most of the Australian population, it has remained prevalent among certain groups of Indigenous Australians. The late Father Frank Flynn, an Australian-born and London-trained ophthalmologist turned Catholic priest, worked as an Army chaplain in Darwin in 1941. He was the first to recognise the frequent occurrence of trachoma among Indigenous people in the Northern Territory, and their welfare became his life's work. After World War II, Ida Mann, an English ophthalmologist who had worked with Frank Flynn in London before the war, moved to Perth. She subsequently conducted extraordinary trips throughout the outback, examining and treating Indigenous people with trachoma. In the 1960s, Fred Hollows took up his position as Professor of Ophthalmology at the University of New South Wales and became aware of the importance of trachoma in Australia. First working with the Gurindji people at Wave Hill in the Northern Territory and then with the people around Bourke in far western New South Wales, he cajoled the Federal Government and the Royal Australian College of Ophthalmologists into establishing the National Trachoma and Eye Health Program (the "Trachoma Program"). From 1976 to 1978, the Trachoma Program teams visited every Indigenous community in Australia (including some groups in large urban centres), examining over 62 000 Indigenous people and nearly 40 000 others (consisting of whites, Asians, etc, in rural and remote areas). It gave a clear picture of the number of people affected with trachoma and its distribution. They also treated nearly 40 000 people for trachoma and set up clear guidelines and recommendations as to what needed to be done to eliminate trachoma.1 In 1996, I was asked by the Federal Minister for Health to prepare a report on Indigenous eye health.2 It was very satisfying to go back to places like Bourke and Broome and find that trachoma had essentially disappeared over the previous 20 years. Clearly, progress was being made — at least in the towns and larger communities. In other areas, although the amount of trachoma had decreased and fewer children were affected, their elders still had scarred eyelids and blindness from the inturned eyelashes caused by trachoma. However, I was devastated to find that in some other communities, such as Jigalong in the Western Desert, and Amata and Fregon in the Musgrave Ranges, the rates of trachoma in children had not changed one jot over the 20-year period. At a meeting of the World Health Organization (WHO) in Geneva a few years ago, we added up the number of countries where blinding trachoma still occurred. We counted 54 — Australia is the only developed country on that list. WHO has launched a special program for the Global Elimination of blinding Trachoma by the year 2020 ("GET 2020").3-5 Its aim is to eliminate trachoma from the poorest areas of Africa and Asia over the next 20 years. My colleagues from other countries turn to me and ask, "How can you possibly still have trachoma in your country?". Fred Hollows once said that trachoma was a disease of the crèche, the preschool childcare group. Studies I subsequently did, both in the laboratory6,7 and in the field,8,9 identified and confirmed the importance of repeated episodes of reinfection by C. trachomatis. Each episode of infection gives more inflammation that leads to more scarring and a greater likelihood of eventual blindness. Endemic trachoma persists in areas where living standards are inadequate, with poor personal and community hygiene that permit the frequent spreading of infected eye secretions from one child to another. To stop trachoma, one needs to stop the transmission by improving living conditions. After all, this is what happened in mainstream Australia 100 years ago. Nowadays, Australians in both urban and rural areas expect to have the basic facilities that are needed for healthy living, such as a house, electricity, clean running water and sewerage, a made road and a rubbish collection facility. We expect them as a right — just recall the outrage in Sydney when the water supply was contaminated in 1998! Nevertheless, the Aboriginal and Torres Strait Islander Commission (ATSIC) has reported that half of the Indigenous people in the Northern Territory do not have adequate housing,10 and one in six communities do not even have potable water. ATSIC estimated that in 1991 there was a $2 billion deficit in funding for basic infrastructure and housing in Indigenous communities. These are services provided by local and state governments to everyone else in Australia. To eliminate trachoma in Australia we need to upgrade the basic services and housing of Indigenous communities in the outback to the same minimal standard that every other Australian enjoys. This is fundamental and can only occur if the Australian community accepts the need and insists that the problem be rectified. We must direct and empower federal, state and local governments to provide the basic community infrastructure and health hardware. This would be a good example of "practical reconciliation" espoused by the Coalition Government. Using research findings of the past decade or so, we have worked with WHO to devise the so-called "SAFE strategy" to eliminate trachoma.5 The SAFE strategy has four components: "S" for surgery (to correct inturned eyelashes); "A" for antibiotics (to eliminate chlamydial infection); "F" for facial cleanliness (to reduce the spread of infection from one child to another); and "E" for environmental improvement (to upgrade community hygiene and living conditions). Some of the recommendations contained in the review of eye health in Aboriginal and Torres Strait Islander communities2 related to trachoma, and the Federal Government accepted the recommendations that included the implementation of the SAFE strategy in all communities where trachoma still exists. In 1997, when he accepted the report, the Federal Minister for Health, Dr Wooldridge, promised to "do whatever it takes". The Prime Minister also supported this work, and on a visit to Nhulunbuy in 1998 announced the provision of azithromycin to treat trachoma in Indigenous communities. However, since then, disappointingly little has happened. In most places, little has changed, even though the problem has been clearly identified, strategies have been carefully laid out, verbal support has been given by leaders and there has been a lot of discussion with bureaucrats. In areas with severe trachoma, one in five of the older people have inturned lashes, and about half of these are either blind already or will eventually go blind. It is a tragedy to see their children or their grandchildren suffering from trachoma infection, because you know that they are on the same escalator and will certainly suffer the same fate if things do not improve. We can stop this if we as a community care. Trachoma is entirely preventable. Although it disappeared from white Australia 100 years ago, it could take another century to disappear from Indigenous Australia if we do not do something about it. We can not wait that long. All Australians have the right to sight. The time to act is now. Do we have the will? References National Trachoma and Eye Health Program. Sydney: Royal Australian College of Ophthalmologists, 1980. Taylor HR. Eye health in Aboriginal and Torres Strait Islander communities. Report of a review commissioned by the Commonwealth Minister for Health and Family Services, the Hon Dr Michael Wooldridge. Canberra: Commonwealth of Australia, 1997. Dawson C, Schachter J. Can blinding trachoma be eliminated worldwide? Arch Ophthalmol 1999; 117: 974. Taylor HR. Towards the global elimination of trachoma. Nat Med 1999; 5: 492-493. World Health Organization. Future approaches to trachoma control. Report of a global scientific meeting; 1996 June 17-20, Geneva, Switzerland. Geneva: WHO, 1996. (WHO Publication 96.56.) Taylor HR, Prendergast RA, Dawson CR, et al. An animal model of cicatrizing trachoma. Invest Ophthalmol Vis Sci 1981; 21: 422-433. Taylor HR, Maclean IW, Brunham RC, et al. Chlamydial heat shock proteins and trachoma. Infect Immun 1990; 58: 3061-3063. Taylor HR, Millan-Velasco F, Sommer A. The ecology of trachoma: an epidemiological study of trachoma in Southern Mexico. Bull World Health Organ 1985; 63: 559-567. Taylor HR, West SK, Mmbaga BBO, et al. Hygiene factors and increased risk of trachoma in Central Tanzania. Arch Ophthalmol 1989; 107: 1821-1825. Water: a report on the provision of water and sanitation in remote Aboriginal and Torres Strait Islander communities. Canberra: AGPS, 1994. Jones R. The housing needs of indigenous Australians, 1991. Research Monograph No. 8. Canberra: Centre for Aboriginal Economic Policy Research, Australian National University, 1994: 149-151. This is an edited version of a talk presented on the ABC Radio National program Ockham's Razor, 1 July 2001. Authors' details Centre for Eye Research Australia, East Melbourne, VIC. Hugh R Taylor, AC, MD, FRACO, Professor of Ophthalmology. Reprints: Professor H R Taylor, Centre for Eye Research Australia, Locked Bag 8, East Melbourne, VIC 8002. h.taylorATunimelb.edu.au Make a comment

Hugh R Taylor

MJA 2001; 175: 379-381 Abstract Predictive genetic testing should only be performed on children if it is in their best interests. "Interests" include psychosocial elements. Predictive testing is performed on children when there are interventions to prevent disease or to detect and treat it early and it is necessary to begin these interventions in childhood. It is also performed for diseases known to commence in childhood. Predictive testing in children for adult-onset conditions for which there is no medical intervention is highly controversial. Competent children and adolescents can consent to predictive genetic testing. Predictive testing can result in harm, such as discrimination (eg, in insurance entitlement or employment) and stigmatisation. Predictive testing can have important non-medical benefits in terms of self-knowledge and life planning. A hypothetical clinical encounter (bold comments in brackets refer to bolded points in Boxes 1 and 2): Mrs Smith presents to Dr Jones for a script for an oral contraceptive. She is 38 years old and has recently been diagnosed as carrying the gene for Huntington's disease. She will develop progressive and irreversible dementia and movement disorder between the ages of 40 and 60. Mrs Smith has an 11-year-old daughter, Jane, and a 16-year-old son, John, who both have a 50% chance of carrying the gene. Mrs Smith: I wanted to talk to you about getting Jane and John tested for Huntington's. [Parental autonomy] Dr Jones: Why do you want them tested? Mrs Smith: We all saw my father start getting dementia at 50. He's 56 and in a nursing home now. They're smart kids. They know they've got a 50/50 chance of getting it themselves. John has been on the net and knows there's a test. I think he's old enough to know, and he wants to know. I think it would be bad if he knew and Jane didn't. [Competent children] Dr Jones: Shouldn't we wait until they're adults and can make that decision for themselves? Maybe as adults they'll wish they hadn't been tested. If they're tested now, they won't have the option of not knowing. Most adults who have a chance of carrying the Huntington's gene have decided not to have testing. [Predictive testing fails to respect child's later autonomy; right not to know] Mrs Smith: We've always been open about Huntington's in our family. Everyone's been tested except Jane and John. Huntington's is nothing to be ashamed of. I think they should know what their life is going to be like. That'll help them to make the best decisions about what to do with their life, like which career to choose. That's not relevant to Jane now, but it will be soon. Just because most people don't want it doesn't mean it isn't good for us. [Beneficial in non-medical sense; broad definition of interests] I also think, if they're not tested now, they won't have the chance to adapt to the knowledge as they grow up. It won't affect them in the same way as it would if they found out when they were 30 when they've got firm commitments to their jobs and maybe partners. [Better psychosocial adjustment] Dr Jones: All the genetics societies around the world advise against genetic testing in children when you can't do anything to prevent or treat the disease, like in Huntington's. What's the problem with waiting a few years? [Professional guidelines] Mrs Smith: I read that Professor Bob Williamson, a professor of genetics, said that studies showed that if you give mice who will get Huntington's coloured baubles and tubes to play with it delays the onset of symptoms. He said this might be a reason to test children and then intellectually challenge them."13 Dr Jones: I don't think giving your kids coloured baubles to play with will do anything. No, seriously, I'm not sure that you can extrapolate from mice to humans. But even if there are benefits, there may be serious harms as well. It's important for kids to feel they belong and that they aren't different and abnormal. Some children would get depressed if they knew they were going to get Huntington's. It might stop them from taking up a challenging career. And, in the future, it may be much harder for them to get a job or insurance. [Non-maleficence] Mrs Smith: Our children already know they're different — they've got a 50% chance of getting Huntington's. I think it's better to resolve the uncertainty. Even if they have the gene, in one sense they won't be different — they'll share something pretty important with me. [Resolve uncertainty] Dr Jones: Even if you're right, there's a lot of potential for psychological harm. Some people who have tested positive for Huntington's have committed suicide. [Non-maleficence] Mrs Smith: Our kids aren't like that. You don't know them like I do. Anyway, I thought there was some research which showed that people who have testing are better off psychologically than people who don't, even if the result is positive.11 And kids seem to adjust to these sorts of things. My cousin's daughter has kidney problems. She'll probably get kidney failure and need dialysis eventually. No one thought to not tell her that. [Better psychosocial adjustment] Dr Jones: One of my other patients has Huntington's disease. She was pregnant and had prenatal testing because she thought she might terminate the pregnancy if she had a child with Huntington's. The test was positive, but she decided she wanted to keep the baby. She grew up knowing that he had the Huntington's gene. She was always very anxious about him, and he had a very disturbed upbringing. I think it was really bad for both of them to know. [Non-maleficence; parental guilt] Mrs Smith: I think it's good to know. For some people it may be bad because of the way they react to things. But if I'd known I was carrying the Huntington's gene earlier, maybe I would've had children sooner, or I wouldn't've worked so hard and spent more time with them. But that's all past now. I want them to have what I didn't have: knowledge about themselves. [Self-knowledge] Dr Jones: But what about the mystery and surprise of life? Don't you think that's important? Mrs Smith: There'll still be mystery. Does your knowing you'll kick it by 85 take away the mystery of life? They won't know who they're going to marry. They won't know what their children will be like. It's not like knowing the ending to a thriller. Huntington's is only one part of our lives. I want them to have the best life they can. But to do that they need to know something about themselves.14 Life isn't always how we want it to be, but we have to accept reality and make the most of it, not just bury our heads in the sand and hope our problems will go away. [Self-knowledge] Dr Jones: I'd like you to think about how it would be for you and your children if they knew they were going to suffer like your father did. I don't know if I should do what you ask. I have to do what I believe is best for your children. But I want to go away and think about it, look at some of the research on psychosocial effects of genetic testing and discuss it with some of my colleagues. We need to discuss it with your children and your husband as well. Can we all meet next week to have another talk about this? [Best interests; dialogue] Clinical ethics involves engaging in open dialogue with patients, and listening to their arguments and reasons. Ultimately, doctors should not intentionally harm their patients. So they must make a decision about whether a medical intervention is in the patient's best interests. That decision must be based on the particularities of the situation, including the social circumstances and the patient's psychology, desires, values and reasons.15,16 Whatever his final decision, Dr Jones was engaged in clinical ethics. References Working Party of the Clinical Genetics Society (UK). The genetic testing of children. J Med Genet 1994; 31: 785-797. Points to consider: ethical, legal and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, Advisory Council on Medical Genetics Board of Directors. Am J Hum Genet 1995; 57: 1233-1241. Human Genetics Society of Australasia. Predictive genetic testing in children and adolescents. March 1999. Available at: <http://www.hgsa.com.au/policy/ptca.html>. Accessed 23 July 2001. Clarke A. The genetic testing of children. J Med Genet 1996; 32: 492. Marteau TM. The genetic testing of children. J Med Genet 1994; 31: 743. Harper PS, Clarke A. Should we test children for "adult" genetic diseases? Lancet 1990; 305: 1205-1206. Dickenson DL. Can children and young people consent to be tested for adult onset genetic disorders? BMJ 1999; 318: 1063-1066. Harper PS, Glew R, Harper R. Response to requests for genetic testing is not based on age alone. BMJ 1999; 319: 578. Robertson R, Savulescu J. Is there a case in favour of predictive testing of children? Bioethics 2001; 15: 26-49. Clarke A, Flinter F. The genetic testing of children: a clinical perspective. In: Marteau TM, Richards MPM, editors. The troubled helix: social and psychological implications of the new human genetics. Cambridge: Cambridge University Press, 1996: 164-176. Wiggins S, Whyte P, Huggins M, et al. The psychological consequences of predictive testing for Huntington disease. N Engl J Med 1992; 327: 1401-1405. Meiser B, Gleeson MA, Tucker KM. Psychological impact of genetic testing for adult-onset disorders. Med J Aust 2000; 172: 125-129. Williamson B. Using your brain keeps you bright. Aust Med 2000; 12: 16. Savulescu J, Momeyer RW. Should informed consent be based on rational beliefs? J Med Ethics 1997; 23: 282-288. Savulescu J. Liberal rationalism and medical decision-making. Bioethics 1997; 11: 115-129. Savulescu, J. Rational non-interventional paternalism: why doctors ought to make judgements of what is best for their patients. J Med Ethics 1995; 21: 327-331. Authors' details Murdoch Children's Research Institute, Royal Children's Hospital, Parkville, VIC. Julian Savulescu, MBBS, PhD, Associate Professor and Director, Ethics Unit, and Ethics Programme, Centre for the Study of Health and Society, University of Melbourne. savulesjATcryptic.rch.unimelb.edu.au Make a comment 1: Key facts about predictive genetic testing in children The Human Genome Project will reveal unprecedented amounts of information about our predisposition to develop disease. No test, including any genetic test, should be performed on a child unless it is in the child's best interests. "Interests" should not be construed in narrow medical terms, but according to a broad definition of interests which includes biological, social and psychological elements. Decisions about interests can only be made after dialogue with patients to elucidate their particular psychosocial circumstances. The Clinical Genetics Society in the United Kingdom,1 the American Society of Human Genetics (ASHG)2 and the Human Genetics Society of Australasia3 have each published guidelines that strongly advise against genetic testing in children for a disease in which surveillance, pre-emptive or definitive medical treatment is not available in childhood. Predictive testing is performed in children for some familial bowel cancers (eg, familial adenomatous polyposis) because definitive treatment exists and surveillance must commence in childhood.4-6 Predictive testing may have implications for the child's later employment (although federal antidiscrimination legislation protects against such discrimination in theory) and if the child wants to take out life insurance. It may also result in stigmatisation, resulting in diminished marriage, reproduction and education opportunities.3 Most adults at risk of having the Huntington gene have so far decided not to have the genetic test. In deciding whether to perform predictive testing, the competence or developmental stage of the child should be considered. Older, competent children or adolescents can consent to predictive genetic testing.3,7-9 Younger, incompetent children should still participate in counselling according to their developmental age. Testing without disclosure of the results to the child should not be performed.3 There is little evidence on the psychosocial impact of genetic testing in children.3,9 Back to text 2: Arguments for and against predictive genetic testing in children (all controversial9) Arguments in favour Information about one's predisposition to disease can be beneficial in non-medical sense to allow more informed reproductive decision-making, career choice, financial planning and end-of-life decision-making.3,9 Self-knowledge can promote more autonomous decision making about one's life.9 Testing can resolve uncertainty and consequent anxiety in parents and children.3 Testing can show respect for parental autonomy and avoid professional paternalism.3 Participation of a child in decisions about testing can promote the development of autonomy.9 Early testing may result in better psychosocial adjustment than later testing, when lifestyle and life plans have been firmly established.9 Arguments against Predictive testing fails to respect the child's later autonomy to decide whether to have testing or not and violates the future adult's "right not to know".4,10 Testing breaches the child's right to confidentiality.4,10 Non-maleficence (not harming): testing may cause harm to the child through causing disturbed family dynamics (as parents treat that child differently), negative parental attitudes to the child, depression, anxiety, low sense of self-esteem, discrimination and stigmatisation (see Box 1).6,11,12 Parental guilt.12 Back to text

Julian Savulescu