CORRESPONDENCE

INT J TUBERC LUNG DIS 18(8):1132–1134 Q 2014 The Union

Correspondence Private rights vs. public good: a matter for opinion polls? We read with great interest the article by Denholm et al., in a recent issue of the Journal, presenting the results of a survey among a subset of Union members about attitudes towards involuntary incarceration for tuberculosis (TB) and ‘...highlight[ing] a number of key elements with the tensions surrounding involuntary incarceration.’1 Unsurprisingly, the study communicates a wide range of viewpoints. The authors conclude that there was a ‘significant association’ between principled objections against involuntary incarceration for TB and geographical region. Commonly, value orientations and preferences are supposed to be conditioned by the cultural life forms and traditions of a given society rather than by geography (or meteorology). One might assume that the perceptions of and attitudes towards TB in democratic societies such as South Africa and authoritarian states in Central Africa (African Region) or in Ukraine and Germany (European Region) are far too heterogeneous to be reduced to a common denominator. Likewise, the large US society, which comprises the principle part of the North America Region, is, according to sociological opinio communis, the society based on liberal principles par excellence, yet it shows up as the region with the lowest rate of principled objections against involuntary incarceration. This at least prima facie paradoxical result might perhaps have deserved more comment than a reference to an empirical US study questioning regulatory interventions and, thus, rather reversing the developed argument.2 The discussion part of the study combines the registers of descriptive social research and deontology. Even if it was conceived as a heuristic approach, it seems questionable whether normative reflexions can be adequately guided by a discussion of the value orientations and preferences of a survey population. The latter are subject to choice by persons acting in a purposive manner and incapable of further justification. The discussion consequently places preferences, concrete values, procedures, abstract principles and norms all on the same level, finally relegating — in a neo-Aristotelian way — political, ethical and legislative deliberations to a matter of unjustifiable prudential considerations. Considerations concerning the crucial difference between the justification of norms and the conditions of their application are intermingled. Debates in the US round the 1993 New York City Health Code (to which the article refers) covered the

normative aspects evoked in the article. These debates might perhaps also have inspired a more systematic development of the normative reflections.3,4 As for other transmissible diseases, involuntary incarceration for TB in modern constitutional democracies can only be imposed on a legislative basis and after judicial decision. Morally, at least, the following seems at stake: does political power have the legitimacy to ‘set’ the corresponding legislation? Does this legislation correspond to the moral principles generally adhered to in the society? Does the legal procedure guarantee an adequate and sufficiently complete comprehension of relevant contexts in the light of competing rules? Does it allow for timely revision of decisions? What basic deontological principles of the medical profession (such as respect of confidentiality and physical integrity) are jeopardised? ¨ NOESKE, PHD JURGEN Senior Consultant PB 4609 Douala Cameroon e-mail: [email protected]

http://dx.doi.org/10.5588/ijtld.14.0149

References 1 Denholm J T, Amon J J, O’Brien R, et al. Attitude towards involuntary incarceration for tuberculosis: a survey of Union members. Int J Tuberc Lung Dis 2014; 18: 155–159. 2 Gasner M R, Maw K L, Feldman G E, Fujiwara P I, Frieden T R. The use of legal action in New York City to ensure treatment of tuberculosis. N Engl J Med 1999; 340: 359–366. 3 New York City Health Code (3-31-93), ch. 11–47 (RCNY: 10 309–10 312). 4 Davis M. Arresting the white death: preventive detention, confinement for treatment, and medical ethics. APA Newsletters 1995; 94: 92–98.

In reply We thank Dr Noeske for his comments. We agree that involuntary incarceration in whatever form raises challenging moral and political questions, and we are pleased to see that our article has served to stimulate further reflection in this way. Dr Noeske raises questions regarding the appropriateness of regional evaluation of responses to our practitioner survey. While it is correct to say that such analysis will not detect potentially valuable findings at an individual country level, even a survey with the statistical power to do so would inevitably miss important sub-national distinctions and so forth. The

[Aversion in French of this exchange is available from the Editorial Office in Paris and from the Union website www.theunion.org]

Correspondence

purpose of our analysis here was primarily to demonstrate that attitudes towards involuntary incarceration vary considerably, and that such variation may need to be taken into account when developing policies or engaging in other considerations regarding these practices. On the more general question of combining empirical study and theoretical approaches to ethics, we would argue that the complex interplay between praxis and theory demands nothing less. Ethical theory is not determined by opinion polls, but fails a critical part of its task if it cannot engage in a dynamic conversation, both informed by and challenging experience. We trust that this will not be the ‘last word’ on either the practice or theory relating to involuntary incarceration, but that it will be a helpful part of this continuing conversation. JUSTIN T. DENHOLM*† JOSEPH J. AMON ‡ RICHARD O’BRIEN R.* APURVA NARAIN* SANG-JAE KIM* ASMA EL SONY* MARY E. EDGINTON* *Ethics Advisory Group, International Union Against Tuberculosis and Lung Disease Paris, France †Victorian Tuberculosis Program, Melbourne Health Parkville, VIC, Australia ‡Health and Human Rights Division Human Rights Watch, New York, NY, USA e-mail: [email protected] http://dx.doi.org/10.5588/ijtld.14.0149-2

Time for research ethics to broaden its scope Historical atrocities committed in the name of science cast a black mark on the field of medical research that persists today. There are countless examples of research studies that have – deliberately or unintentionally – inflicted physical and/or emotional harm on human subjects. However, outrage at these activities eventually led to the Nuremburg Code, the Declaration of Helsinki, the Belmont Report and other frameworks that command researchers to uphold the principles of autonomy, beneficence and justice. The nuances of these principles, and how they should be applied, are often debated, but there is general consensus in the global research community that the protection of human participants is a moral imperative. When developing study protocols investigators now spend a great deal of time considering the risks and harms to which research participants might be exposed, and how they could be mitigated. While these practices are not yet universal, and

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unethical treatment of human research subjects is regrettably far too common, great strides in the protection of study participants have been made over the past several decades. Yet there is another dimension of research ethics that to date has received inadequate attention: the protection of research staff. Every successful medical study relies on research staff to recruit participants, collect data and, often, obtain biological specimens. Engaging in these activities can expose fieldworkers to environmental hazards from which they may or may not be adequately equipped to protect themselves, especially in resource-limited settings. Depending on the nature of the investigation, handling and transporting blood, sputum, stool and other specimens are often routine tasks that in many parts of the world are performed by staff with no clinical training. Further, airborne infections in institutional and household environments can threaten staff health even when they are not in contact with potentially biohazardous samples. Infection control measures can offer a great deal of protection against these risks when applied consistently and correctly, but investigators may not have the knowledge and/or resources required to implement appropriate programmes. It is difficult to ascertain the extent to which infection control practices are inadequate in research settings; in contrast to the occupational health literature on health professionals in institutional roles, there is a scarcity of research focused on nurses and lay staff who are engaged in fieldwork. This very gap, however, suggests that it is likely a neglected area. Ensuring participant protection is not left solely to the discretion of the researcher, and staff protection should not be treated any differently. While the accountability lies with study investigators, funding bodies and research institutions worldwide require that ethical approval be obtained before studies involving human subjects can be initiated. Members serving on institutional review boards and ethics committees thoroughly review the proposed procedures and processes, and have the authority to call for modifications to any component that they deem discordant with ethical practice. It is time to recognise that ethical research comprises both participant and staff protection, and to demand that ethics bodies examine potential hazards to which staff may be exposed during the course of a study, together with proposed strategies for minimising these risks. Investigators who are unable to demonstrate the capacity to institute appropriate measures of staff protection should be called upon to revise their research plan before approval is granted. Medical research is crucial to disease prevention and control efforts, but just as we no longer tolerate research conducted at the expense of study partici-

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pants, we cannot tolerate research conducted at the risk of study personnel. C. L. HEIDEBRECHT South African Medical Research Council Durban South Africa e-mail: [email protected] http://dx.doi.org/10.5588/ijtld.14.0144

In reply The author raises the issue of risks for researchers and assistants associated with the research enterprise, and suggests that research ethics committees should begin to consider staff safety in their assessment of the proposed research. The issue of appropriate training and protection of research staff is highly important (and I am pleased to see it raised). However, I would argue that addressing it falls outside the scope of research ethics committees per se. Appropriate training for research staff is already an issue for research ethics committees to consider, and is primarily relevant in instances where inappropriate training or experience could lead to harm for research subjects. Addressing broader health and safety concerns for staff, as mentioned in

this letter, requires a governance response from the supporting institution, which will include appropriate policies relating to employment, supervision, adequate training, infection control practices and facilities and so forth, many of which fall both outside of the scope and power of research ethics committees. I would be wary of conflating these processes; the central emphasis of research ethics committees must remain on the protection of the research subject, and broadening its focus would inevitably lead to dilution of its primary intention. The call for better protection for research staff in study design and conduct is well-presented and laudable; my own perspective (as a researcher and member of several ethics committees) is that the case would be stronger if it was not coupled with a call for the research ethics committee to perform this function but if it looked instead to other mechanisms for institutional engagement. JUSTIN DENHOLM*† *Ethics Advisory Group, International Union Against Tuberculosis and Lung Disease Paris, France †Victorian Tuberculosis Program, Melbourne Health Parkville, VIC, Australia e-mail: [email protected] http://dx.doi.org/http://dx.doi.org/10.5588/ijtld.14.0144-2

ERRATA

IN THE ARTICLE entitled ‘LTBI screening in rheumatoid arthritis patients prior to anti-TNF treatment in an endemic area’ by K. R. Bonfiglioli, A. C. M. Ribeiro, J. C. B. Moraes, C. G. S. Saad, F. H. C. Souza, A. L. Calich, E. Bonfa, I. M. M. Laurindo (Int J Tuberc Lung Dis 2014; 18(8): 905–911; http://dx. doi.org/10.5588.ijtld.13.0755), the legends of Figures 1 and 2 were misplaced. The legend for Figure 1 can be found under Figure 2, and vice versa. [http://dx.doi.org/10.5588.ijtld.13.0755-e] IN THE ARTICLE entitled ‘Tuberculosis among newly arrived foreign spouses before obtaining citizenship, Taiwan, 2006–2011’ by M-M. Kuan, H-L. Yang, H. S. Wu (Int J Tuberc Lung Dis 2014; 18(8): 931–938; http://dx.doi.org/10.5588/ijtld.13.0809), the first affiliation should have read *Centers for Disease Control, Ministry of Health and Welfare, Taipei [http://dx.doi.org/10.5588/ijtld.10.0809-e]

Private rights vs. public good: a matter for opinion polls?

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