INT J TUBERC LUNG DIS 18(2):155–159 © 2014 The Union http://dx.doi.org/10.5588/ijtld.13.0609
Attitudes towards involuntary incarceration for tuberculosis: a survey of Union members J. T. Denholm,*† J. J. Amon,‡ R. O’Brien,* A. Narain,* S. J. Kim,* A. El Sony,*§ M. E. Edginton* * Ethics Advisory Group, International Union Against Tuberculosis and Lung Disease, Paris, France; † Victorian Infectious Disease Service, Royal Melbourne Hospital, at the Peter Doherty Institute for Infection and Immunity, Parkville, Victoria, Australia; ‡ Health and Human Rights Division, Human Rights Watch, New York, New York, USA; § The Epidemiology Laboratory (Epi-Lab), Khartoum, Sudan SUMMARY BACKGROUND:
Policies involving the use of involuntary incarceration for tuberculosis (TB) are highly ethically controversial. To encourage ethical reflection within the International Union Against Tuberculosis and Lung Disease (The Union), the Ethics Advisory Group (EAG) surveyed members regarding their attitudes and values relating to involuntary incarceration for TB. M E T H O D S : Members of the Union TB section were invited to respond to an anonymous web-based survey. The survey included both multiple choice questions describing a range of scenarios regarding involuntary incarceration, and free-text fields inviting respondents to provide general comments on ethical issues. R E S U LT S : The survey was completed by 194 participants, 33 (17%) of whom were opposed to involuntary incarceration on principle. The age and sex of the respon-
dents was not associated with likelihood of principled opposition; respondents from North America were least likely to be opposed to involuntary incarceration (P = 0.02). Respondents were most likely to consider involuntary incarceration for persons with known multidrugresistant TB or a history of previous treatment default, and least likely where people lived alone, were universityeducated or the main income provider for their families. C O N C L U S I O N : This survey found a wide range of viewpoints regarding involuntary incarceration, and highlights a number of key elements in ethical engagement with the tensions surrounding involuntary incarceration. We provide commentary on approaches to ethical policy making in the light of these findings. K E Y W O R D S : tuberculosis; ethics; human rights; transmission; incarceration
THE MAJORITY OF TUBERCULOSIS (TB) transmission in communities occurs before identification of disease, with effective introduction of treatment rapidly reducing the risk of transmission.1 For a small number of people, however, a significant risk of transmission may persist after diagnosis. This may result from a lack of appropriate available treatment, such as in some patients with multidrug-resistant (MDRTB) or extensively drug-resistant TB (XDR-TB), or occasionally from an individual’s refusal to accept treatment. The public health management of people with persisting risk of community transmission can be challenging, and in recent years a variety of strategies for engaging with this issue have been explored.2–5 One component of such strategies is the use of involuntary incarceration, which involves the enforced isolation of people with persisting infectious risk to limit community transmission and secondary infection. Proposals involving the use of involuntary incarceration for TB are highly ethically controversial, and current World Health Organization guidance emphasises the ‘exceptional’ circumstances under which
forcible detention of TB patients may be considered appropriate.6 How ‘exceptional’ involuntary incarceration should be, and the extent to which specific policy on involuntary incarceration respects international human rights law related to arbitrary detention and due process in practice, is contested.4,7,8 Proponents of involuntary incarceration may highlight the community risk associated with active TB, while opponents point particularly to the restriction of human rights, the discriminatory impact and the limited effectiveness of such policies. In recent years, the high mortality and populationlevel impact of MDR-TB have placed added pressure on health care systems to consider strategies to reduce infectivity, particularly in the light of increasing evidence of widespread community transmission.9 The MDR- and XDR-TB epidemic has lent increasing urgency to consideration of such strategies, including reflection on the appropriate use of involuntary incarceration. To encourage ethical reflection within the International Union Against Tuberculosis and Lung Disease
Correspondence to: Justin T Denholm, Victorian Infectious Diseases Service, Royal Melbourne Hospital, Grattan Street, Parkville, VIC, Australia 3050. Tel: (+61) 3 9342 7000. Fax: (+61) 3 9342 7277. e-mail: [email protected] Article submitted 19 August 2013. Final version accepted 3 October 2013.
156
The International Journal of Tuberculosis and Lung Disease
(The Union) on matters relating to involuntary incarceration for TB, the Ethics Advisory Group (EAG) of The Union decided 1) to canvass The Union’s membership about their perceptions about the acceptability of involuntary incarceration, and 2) for those who considered the practice potentially acceptable, to evaluate the factors that influenced these decisions.
METHODS In June 2013, members of the TB section of The Union were contacted using a previously established e-mail list and invited to complete a web-based survey regarding involuntary incarceration for TB.* The questionnaire was anonymous, with non-identifying demographic details of participants recorded. The survey included both multiple choice questions describing a range of scenarios regarding involuntary incarceration, and free-text fields inviting respondents to provide general comments on ethical issues. Attitudes were assessed using a five-point Likert scale, ranging from ‘Much less likely’ (=1) to ‘Much more likely’ (=5). Participants who reported principled objection to involuntary incarceration did not have responses recorded for subsequent scenarios, but were invited to provide general comments for inclusion. The survey responses were recorded and basic descriptive statistics were performed using Excel (Microsoft, Redmond, WA, USA) and Stata 10 (Stata Corp, College Station, TX, USA). χ2 and Fisher’s exact tests were used to perform between-group comparison of responses. P < 0.05 was considered statistically significant. Free-text responses were extracted and categorised by theme. The EAG is responsible for the ethics review of research within The Union.10 As this survey was developed and conducted by EAG members, an independent review was considered appropriate. The project was therefore approved by the institutional ethics committee of the primary author (Melbourne Health Human Research Ethics Committee, Melbourne, Australia).
Table 1 Characteristics of respondents Demographic factor
n (%)
Sex Male Age, years
Attitudes towards involuntary incarceration for tuberculosis: a survey of Union members J. T. Denholm,*† J. J. Amon,‡ R. O’Brien,* A. Narain,* S. J. Kim,* A. El Sony,*§ M. E. Edginton* * Ethics Advisory Group, International Union Against Tuberculosis and Lung Disease, Paris, France; † Victorian Infectious Disease Service, Royal Melbourne Hospital, at the Peter Doherty Institute for Infection and Immunity, Parkville, Victoria, Australia; ‡ Health and Human Rights Division, Human Rights Watch, New York, New York, USA; § The Epidemiology Laboratory (Epi-Lab), Khartoum, Sudan SUMMARY BACKGROUND:
Policies involving the use of involuntary incarceration for tuberculosis (TB) are highly ethically controversial. To encourage ethical reflection within the International Union Against Tuberculosis and Lung Disease (The Union), the Ethics Advisory Group (EAG) surveyed members regarding their attitudes and values relating to involuntary incarceration for TB. M E T H O D S : Members of the Union TB section were invited to respond to an anonymous web-based survey. The survey included both multiple choice questions describing a range of scenarios regarding involuntary incarceration, and free-text fields inviting respondents to provide general comments on ethical issues. R E S U LT S : The survey was completed by 194 participants, 33 (17%) of whom were opposed to involuntary incarceration on principle. The age and sex of the respon-
dents was not associated with likelihood of principled opposition; respondents from North America were least likely to be opposed to involuntary incarceration (P = 0.02). Respondents were most likely to consider involuntary incarceration for persons with known multidrugresistant TB or a history of previous treatment default, and least likely where people lived alone, were universityeducated or the main income provider for their families. C O N C L U S I O N : This survey found a wide range of viewpoints regarding involuntary incarceration, and highlights a number of key elements in ethical engagement with the tensions surrounding involuntary incarceration. We provide commentary on approaches to ethical policy making in the light of these findings. K E Y W O R D S : tuberculosis; ethics; human rights; transmission; incarceration
THE MAJORITY OF TUBERCULOSIS (TB) transmission in communities occurs before identification of disease, with effective introduction of treatment rapidly reducing the risk of transmission.1 For a small number of people, however, a significant risk of transmission may persist after diagnosis. This may result from a lack of appropriate available treatment, such as in some patients with multidrug-resistant (MDRTB) or extensively drug-resistant TB (XDR-TB), or occasionally from an individual’s refusal to accept treatment. The public health management of people with persisting risk of community transmission can be challenging, and in recent years a variety of strategies for engaging with this issue have been explored.2–5 One component of such strategies is the use of involuntary incarceration, which involves the enforced isolation of people with persisting infectious risk to limit community transmission and secondary infection. Proposals involving the use of involuntary incarceration for TB are highly ethically controversial, and current World Health Organization guidance emphasises the ‘exceptional’ circumstances under which
forcible detention of TB patients may be considered appropriate.6 How ‘exceptional’ involuntary incarceration should be, and the extent to which specific policy on involuntary incarceration respects international human rights law related to arbitrary detention and due process in practice, is contested.4,7,8 Proponents of involuntary incarceration may highlight the community risk associated with active TB, while opponents point particularly to the restriction of human rights, the discriminatory impact and the limited effectiveness of such policies. In recent years, the high mortality and populationlevel impact of MDR-TB have placed added pressure on health care systems to consider strategies to reduce infectivity, particularly in the light of increasing evidence of widespread community transmission.9 The MDR- and XDR-TB epidemic has lent increasing urgency to consideration of such strategies, including reflection on the appropriate use of involuntary incarceration. To encourage ethical reflection within the International Union Against Tuberculosis and Lung Disease
Correspondence to: Justin T Denholm, Victorian Infectious Diseases Service, Royal Melbourne Hospital, Grattan Street, Parkville, VIC, Australia 3050. Tel: (+61) 3 9342 7000. Fax: (+61) 3 9342 7277. e-mail: [email protected] Article submitted 19 August 2013. Final version accepted 3 October 2013.
156
The International Journal of Tuberculosis and Lung Disease
(The Union) on matters relating to involuntary incarceration for TB, the Ethics Advisory Group (EAG) of The Union decided 1) to canvass The Union’s membership about their perceptions about the acceptability of involuntary incarceration, and 2) for those who considered the practice potentially acceptable, to evaluate the factors that influenced these decisions.
METHODS In June 2013, members of the TB section of The Union were contacted using a previously established e-mail list and invited to complete a web-based survey regarding involuntary incarceration for TB.* The questionnaire was anonymous, with non-identifying demographic details of participants recorded. The survey included both multiple choice questions describing a range of scenarios regarding involuntary incarceration, and free-text fields inviting respondents to provide general comments on ethical issues. Attitudes were assessed using a five-point Likert scale, ranging from ‘Much less likely’ (=1) to ‘Much more likely’ (=5). Participants who reported principled objection to involuntary incarceration did not have responses recorded for subsequent scenarios, but were invited to provide general comments for inclusion. The survey responses were recorded and basic descriptive statistics were performed using Excel (Microsoft, Redmond, WA, USA) and Stata 10 (Stata Corp, College Station, TX, USA). χ2 and Fisher’s exact tests were used to perform between-group comparison of responses. P < 0.05 was considered statistically significant. Free-text responses were extracted and categorised by theme. The EAG is responsible for the ethics review of research within The Union.10 As this survey was developed and conducted by EAG members, an independent review was considered appropriate. The project was therefore approved by the institutional ethics committee of the primary author (Melbourne Health Human Research Ethics Committee, Melbourne, Australia).
Table 1 Characteristics of respondents Demographic factor
n (%)
Sex Male Age, years
