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The American Journal of Bioethics Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uajb20
Changing the Discourse on Health Systems Research: Response to Open Peer Commentaries on “Ethical Review of Health Systems Research in Low- and MiddleIncome Countries: A Conceptual Exploration” a
Adnan A. Hyder & Abbas Rattani
a
a
Johns Hopkins University Published online: 12 Feb 2014.
To cite this article: Adnan A. Hyder & Abbas Rattani (2014) Changing the Discourse on Health Systems Research: Response to Open Peer Commentaries on “Ethical Review of Health Systems Research in Low- and Middle-Income Countries: A Conceptual Exploration”, The American Journal of Bioethics, 14:2, W1-W2, DOI: 10.1080/15265161.2014.881212 To link to this article: http://dx.doi.org/10.1080/15265161.2014.881212
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
The American Journal of Bioethics, 14(2): W1–W2, 2014 c Taylor & Francis Group, LLC Copyright ISSN: 1526-5161 print / 1536-0075 online DOI: 10.1080/15265161.2014.881212
Downloaded by [Kungliga Tekniska Hogskola] at 02:52 06 October 2014
Correspondence
Changing the Discourse on Health Systems Research: Response to Open Peer Commentaries on “Ethical Review of Health Systems Research in Low- and Middle-Income Countries: A Conceptual Exploration” Adnan A. Hyder, Johns Hopkins University Abbas Rattani, Johns Hopkins University We are gratified by the responses, both in terms of number and thoughtful analysis, to our article on the ethics of health systems research (HSR). In this response we closely consider the contributions by these colleagues. The reason these contributions are welcomed with great enthusiasm is because one of our key objectives (with our initial article) was to change the discourse on the ethics of HSR and ethics review; and these responses begin to accomplish this objective. In addition, we would prefer to further explore and thematically engage with these commentaries, and highlight contributions we felt were particularly insightful to our work. Bamford’s (2014) description, definitions, and further elucidation of vulnerability are very helpful. Our article only thematically alerted readers to vulnerable populations for consideration in the ethical review of HSR. We welcome the philosophical depth Bamford provided by discussing the work of Lange and colleagues, and the observation that environmental contexts do contribute to the classification of vulnerable populations. The points raised on paternalistic protections, enabling conception of justice, and efficient ethics review are important to operationalize some of the issues that have been discussed. Similarly, Hurst’s (2014) discussion of vulnerability, namely, the disproportionate burden that falls on LMIC populations and the lack of capacity to defend their interests, were important points of expansion on our brief discussion of vulnerable populations. Vulnerable populations suffer and face the worst burden due to system weaknesses, which further builds upon our argument of fairness. Fairness is an important consideration in
the ethical review of HSR, especially as it relates to communities and populations that may become vulnerable, not because of inherent weakness, but the context under which they are operating. We are in the process of producing further articles, which will in fact address both the vulnerability issue and justice concerns as raised by Bamford and Hurst. Gupta’s (2014) analysis on the distinguishing aspects of research from practice, and intercultural ethics in the assessment of vulnerability, helped expand the thinking on paternalism when working with vulnerable populations. We welcome Gupta’s expansion of our work, and we think that the role of culture is critical. There is always a risk that we are being paternalistic particularly in terms of feeding the results of the research back into the population and making sure individuals are protected while being respectful of their autonomy and agency. We value the commentaries relating our articles to specific topics. We appreciate Olsen’s (2014) commentary on ancillary care obligations in HSR, elaboration of ancillary care when HSR is conducted in low- and middle- income countries (LMIC), and we agree that certain types of ancillary care will raise specific concerns. The examples reminded us of an interesting parallel to incidental findings, wherein, those who conduct HSR may also, inadvertently, discover other health systems deficiencies. The systemic issues that ancillary care exposes may help elucidate further ethical obligations in HSR, and increase the breadth of possible benefits in the ethical review of HSR. Dereli and colleagues (2014), on the other hand have further extended our analysis of HSR through their discussion of the problem of managing
Address correspondence to Professor Adnan A. Hyder, Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Suite E-8132, Baltimore, MD 21205, USA. E-mail: [email protected]
ajob W1
Downloaded by [Kungliga Tekniska Hogskola] at 02:52 06 October 2014
The American Journal of Bioethics
big data in HSR and the “governance of new forms of uncertainty” (48). The volume and quantity of data generated that could be used for HSR is incredibly large. We believe it is important to test the ethical issues we raise against the issues of working with big data. Similar to our goal of developing an appropriate ethical review mechanism of HSR, Dereli and colleagues’ push to expand the risk assessment model when evaluating HSR is well taken. Finally, Stuart Rennie’s (2014) notion of “tinkering” is a different, form of generating knowledge to fundamentally change how health systems function. Some HSR may be captured by the terminology, and by the social experiments he mentions. However, not all HSR will qualify, and perhaps, we should be cautious of this fact when considering the concept of tinkering in ethics reviews. The thoughtful questions, especially regarding distribution of responsibility, posed by Rennie, are important in the theoretical considerations of the development of a HSR ethics review mechanism. It is gratifying that the central thesis of our article—that there are enough unique features of HSR to warrant specific considerations and that current ethical review guidelines may not be wholly applicable—was not directly challenged by these commentaries. Much research is still required to further develop a unique ethical review mechanism for HSR. All the elements—vulnerability, ancillary care, data management, culture, tinkering, and other considerations
W2 ajob
in LMIC—are what we hope will be reflected in future research. In continuing our work on the development of an ethical analysis of health systems research and review mechanisms we hope to continue this global dialogue.
REFERENCES Bamford, R. 2014. Ethical review of health systems research: Vulnerability and the need for philosophy in research ethics. American Journal of Bioethics 14(2): 38–40. ¨ Guner, ¨ Dereli, T., Y. Cos¸kun, E. Kolker, O. M. Agırbas ¸ lı, and ˘ ¨ V. Ozdemir. 2014. Big data and ethics review for health systems research in LMICs: Understanding risk, uncertainty and ignorance—and catching the black swans? American Journal of Bioethics 14(2): 48–50. Gupta, S. 2014. Ethical review of health systems research in lowand middle-income countries: Research-treatment distinction and intercultural issues. American Journal of Bioethics 14(2): 44–46. Hurst, S. A. 2014. Simplicity as progress: Implications for fairness in research with human participants. American Journal of Bioethics 14(2): 40–41. Olson, N. W. 2014. Conceptualizing ancillary care obligations in health systems research. American Journal of Bioethics 14(2): 46–47. Rennie, S. 2014. Tinkering with the poor. American Journal of Bioethics 14(2): 43–44.
February, Volume 14, Number 2, 2014
The American Journal of Bioethics Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uajb20
Changing the Discourse on Health Systems Research: Response to Open Peer Commentaries on “Ethical Review of Health Systems Research in Low- and MiddleIncome Countries: A Conceptual Exploration” a
Adnan A. Hyder & Abbas Rattani
a
a
Johns Hopkins University Published online: 12 Feb 2014.
To cite this article: Adnan A. Hyder & Abbas Rattani (2014) Changing the Discourse on Health Systems Research: Response to Open Peer Commentaries on “Ethical Review of Health Systems Research in Low- and Middle-Income Countries: A Conceptual Exploration”, The American Journal of Bioethics, 14:2, W1-W2, DOI: 10.1080/15265161.2014.881212 To link to this article: http://dx.doi.org/10.1080/15265161.2014.881212
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
The American Journal of Bioethics, 14(2): W1–W2, 2014 c Taylor & Francis Group, LLC Copyright ISSN: 1526-5161 print / 1536-0075 online DOI: 10.1080/15265161.2014.881212
Downloaded by [Kungliga Tekniska Hogskola] at 02:52 06 October 2014
Correspondence
Changing the Discourse on Health Systems Research: Response to Open Peer Commentaries on “Ethical Review of Health Systems Research in Low- and Middle-Income Countries: A Conceptual Exploration” Adnan A. Hyder, Johns Hopkins University Abbas Rattani, Johns Hopkins University We are gratified by the responses, both in terms of number and thoughtful analysis, to our article on the ethics of health systems research (HSR). In this response we closely consider the contributions by these colleagues. The reason these contributions are welcomed with great enthusiasm is because one of our key objectives (with our initial article) was to change the discourse on the ethics of HSR and ethics review; and these responses begin to accomplish this objective. In addition, we would prefer to further explore and thematically engage with these commentaries, and highlight contributions we felt were particularly insightful to our work. Bamford’s (2014) description, definitions, and further elucidation of vulnerability are very helpful. Our article only thematically alerted readers to vulnerable populations for consideration in the ethical review of HSR. We welcome the philosophical depth Bamford provided by discussing the work of Lange and colleagues, and the observation that environmental contexts do contribute to the classification of vulnerable populations. The points raised on paternalistic protections, enabling conception of justice, and efficient ethics review are important to operationalize some of the issues that have been discussed. Similarly, Hurst’s (2014) discussion of vulnerability, namely, the disproportionate burden that falls on LMIC populations and the lack of capacity to defend their interests, were important points of expansion on our brief discussion of vulnerable populations. Vulnerable populations suffer and face the worst burden due to system weaknesses, which further builds upon our argument of fairness. Fairness is an important consideration in
the ethical review of HSR, especially as it relates to communities and populations that may become vulnerable, not because of inherent weakness, but the context under which they are operating. We are in the process of producing further articles, which will in fact address both the vulnerability issue and justice concerns as raised by Bamford and Hurst. Gupta’s (2014) analysis on the distinguishing aspects of research from practice, and intercultural ethics in the assessment of vulnerability, helped expand the thinking on paternalism when working with vulnerable populations. We welcome Gupta’s expansion of our work, and we think that the role of culture is critical. There is always a risk that we are being paternalistic particularly in terms of feeding the results of the research back into the population and making sure individuals are protected while being respectful of their autonomy and agency. We value the commentaries relating our articles to specific topics. We appreciate Olsen’s (2014) commentary on ancillary care obligations in HSR, elaboration of ancillary care when HSR is conducted in low- and middle- income countries (LMIC), and we agree that certain types of ancillary care will raise specific concerns. The examples reminded us of an interesting parallel to incidental findings, wherein, those who conduct HSR may also, inadvertently, discover other health systems deficiencies. The systemic issues that ancillary care exposes may help elucidate further ethical obligations in HSR, and increase the breadth of possible benefits in the ethical review of HSR. Dereli and colleagues (2014), on the other hand have further extended our analysis of HSR through their discussion of the problem of managing
Address correspondence to Professor Adnan A. Hyder, Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Suite E-8132, Baltimore, MD 21205, USA. E-mail: [email protected]
ajob W1
Downloaded by [Kungliga Tekniska Hogskola] at 02:52 06 October 2014
The American Journal of Bioethics
big data in HSR and the “governance of new forms of uncertainty” (48). The volume and quantity of data generated that could be used for HSR is incredibly large. We believe it is important to test the ethical issues we raise against the issues of working with big data. Similar to our goal of developing an appropriate ethical review mechanism of HSR, Dereli and colleagues’ push to expand the risk assessment model when evaluating HSR is well taken. Finally, Stuart Rennie’s (2014) notion of “tinkering” is a different, form of generating knowledge to fundamentally change how health systems function. Some HSR may be captured by the terminology, and by the social experiments he mentions. However, not all HSR will qualify, and perhaps, we should be cautious of this fact when considering the concept of tinkering in ethics reviews. The thoughtful questions, especially regarding distribution of responsibility, posed by Rennie, are important in the theoretical considerations of the development of a HSR ethics review mechanism. It is gratifying that the central thesis of our article—that there are enough unique features of HSR to warrant specific considerations and that current ethical review guidelines may not be wholly applicable—was not directly challenged by these commentaries. Much research is still required to further develop a unique ethical review mechanism for HSR. All the elements—vulnerability, ancillary care, data management, culture, tinkering, and other considerations
W2 ajob
in LMIC—are what we hope will be reflected in future research. In continuing our work on the development of an ethical analysis of health systems research and review mechanisms we hope to continue this global dialogue.
REFERENCES Bamford, R. 2014. Ethical review of health systems research: Vulnerability and the need for philosophy in research ethics. American Journal of Bioethics 14(2): 38–40. ¨ Guner, ¨ Dereli, T., Y. Cos¸kun, E. Kolker, O. M. Agırbas ¸ lı, and ˘ ¨ V. Ozdemir. 2014. Big data and ethics review for health systems research in LMICs: Understanding risk, uncertainty and ignorance—and catching the black swans? American Journal of Bioethics 14(2): 48–50. Gupta, S. 2014. Ethical review of health systems research in lowand middle-income countries: Research-treatment distinction and intercultural issues. American Journal of Bioethics 14(2): 44–46. Hurst, S. A. 2014. Simplicity as progress: Implications for fairness in research with human participants. American Journal of Bioethics 14(2): 40–41. Olson, N. W. 2014. Conceptualizing ancillary care obligations in health systems research. American Journal of Bioethics 14(2): 46–47. Rennie, S. 2014. Tinkering with the poor. American Journal of Bioethics 14(2): 43–44.
February, Volume 14, Number 2, 2014
