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Learning from Tuskegee: From moral outrage to integrative ethics Ann Gallagher Nurs Ethics 2014 21: 125 DOI: 10.1177/0969733014523106 The online version of this article can be found at: http://nej.sagepub.com/content/21/2/125
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Editorial
Learning from Tuskegee: From moral outrage to integrative ethics
Nursing Ethics 2014, Vol. 21(2) 125–126 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014523106 nej.sagepub.com
Ann Gallagher University of Surrey, UK
The following saying, attributed to the Ibo people, captures well the themes of a range of experiences I have had since writing the last Editorial: Not to know is bad; not to want to know is worse; not to hope is unthinkable; but not to care is unforgiveable.1
I write this following a visit to the National Center for Bioethics in Research and Healthcare and the School of Nursing at Tuskegee University, Alabama, United States. At this time, we are also preparing for the launch of our new International Care Ethics (ICE) Observatory at the University of Surrey, in collaboration with the Ethox Foundation. The ICE Observatory will replace the International Centre for Nursing Ethics (ICNE). The history of Tuskegee University is intertwined with the history of slavery and the emancipation of African Americans. The first principal of the then school at Tuskegee, Booker T. Washington, was born into slavery and witnessed the reading of the Emancipation Proclamation in 1863. His autobiography details the life of a man, without bitterness, utterly committed to the transformative potential of education to improve the conditions of marginalised groups and the need for service to local communities.2 For one movie perspective on this period of American history, readers should see the recent film 12 Years a Slave, which shows the dehumanising impact of slavery and the complexity, cruelty and perversity of master/slave relationships in the southern states of the United States.3 The establishment of the National Center for Bioethics at Tuskegee University in 1999 followed another exploitative historical episode, this time relating to research ethics in the 20th century. The centre was supported by Executive Order, following an apology to research participants, from US President Bill Clinton in response to the exposure of the US Public Health Service (USPHS) Syphilis Study at Tuskegee.4 The study ran from 1932 to 1972. In all, 399 Black African Americans who were infected with syphilis were recruited into the USPHS study, designed to study the natural progression of syphilis, without being told the true nature of the study or that treatment was available following the discovery of antibiotics in the 1940s. Conversations with Tuskegee University staff and students, and subsequent reading, confirmed the importance of interdisciplinary bioethical perspectives. The scope of the discussion of bioethics was wide-ranging with reference to historical, sociological, economic and faith perspectives and relating to race, class, gender, age and sexual orientation, particularly as related to health and flourishing. A definition of this broader approach to bioethics is proposed by Tuskegee bioethicist and professor, Stephen Olufemi Sodeke, as follows: Corresponding author: Ann Gallagher, Faculty of Health and Medical Sciences, International Care Ethics (ICE) Observatory, University of Surrey, Guildford GU2 7TE, UK. Email: [email protected]
Downloaded from nej.sagepub.com at GEORGIAN COURT UNIV on October 2, 2014
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Nursing Ethics 21(2)
Integrative bioethics is the science of life struggles, survival, and flourishing, particularly in the environment of the United States where the seeds of race, ethnicity, gender, class, culture and spirituality have flourished (for good or ill). Essential to the public’s realisation of a humanly lived life is good health and health behaviours [ . . . ] We surmised that an integrative bioethical blending of historical, practical, and ethical considerations of issues, behaviours and actions is necessary to ensure defensible and appropriate responses, social policy and law.5
Reading and listening to accounts of exploitation, deception and cruelty can, understandably, lead to moral outrage and questions such as: How can the acceptance of slavery in a relatively developed society in the mid-19th century be explained? How can we avoid violations of the human rights of research participants, such as that which occurred in the USPHS Syphilis Study at Tuskegee? And how could it happen that a nurse, Eunice Rivers Laurie, was instrumental in keeping research participants ignorant of the true nature of the USPHS study and of the possibility of treatment? In relation to the last question, the author of a book about the USPHS study, who had interviewed Nurse Rivers, said that ‘pondering her life had increased my tolerance for moral ambiguity and had helped me to understand why good people sin’.6 I feel privileged to have had the opportunity to learn more about the historical, sociological and moral context of discriminatory practices, directly from Tuskegee colleagues. Increasing our understanding from reading and the arts also prevents us from not knowing. The Ibo saying, cited at the beginning of this Editorial, also reminds us that we need also to want to know and understand, not to lose hope in the human potential for good and the possibility of positive change in healthcare, research practice and in society at large. Sodeke’s description suggests that integrative ethics could be the approach to bioethics that is needed:7 as the science of survival with concerns about social and environmental justice, urges us to develop the motivation, seize the opportunity, and demonstrate the willpower to accomplish what needs to be done.
We need to move beyond moral outrage and strive to understand societal, organisational and individual acts of injustice and cruelty and, crucially, the factors that make social justice and care endemic and sustainable. This understanding needs to be developed through research, enabled through education and applied to all care practices. Such will be the work of the new International Care Ethics Observatory. ‘Not to care is’, indeed, ‘unforgiveable’.1 Our task therefore is to revalue care and to make its importance, significance and ethical complexity not just visible but dignified and rewarded appropriately. References 1. Elders MJ. Foreword: the search for the legacy of the USPHS syphilis study at Tuskegee. In: Katz RV and Warren RC (eds) The search for the legacy of the USPHS syphilis study at Tuskegee. Lanham, MD: Lexington Books, 2011, pp. ix–xiv. 2. Washington BT. Up from slavery: an autobiography. BLN Publishing (undated). 3. 12 Years a Slave. http://www.theguardian.com/film/movie/156376/12-years-a-slave 4. Warren RC. Healing the sin-sick soul. In: Katz RV and Warren RC (eds) The search for the legacy of the USPHS syphilis study at Tuskegee. Lanham, MD: Lexington Books, 2011, pp. 141–151. 5. Sodeke SO. Tuskegee University experience challenges conventional wisdom: is integrative bioethics practice the new ethics for the public’s health? J Health Care Poor Underserved 2012; 23(4): 15–33. 6. Jones JH. Of thanks and forgiveness. In: Katz RV and Warren RC (eds) The search for the legacy of the USPHS syphilis study at Tuskegee. Lanham, MD: Lexington Books, 2011, pp. 19–27.
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Learning from Tuskegee: From moral outrage to integrative ethics Ann Gallagher Nurs Ethics 2014 21: 125 DOI: 10.1177/0969733014523106 The online version of this article can be found at: http://nej.sagepub.com/content/21/2/125
Published by: http://www.sagepublications.com
Additional services and information for Nursing Ethics can be found at: Email Alerts: http://nej.sagepub.com/cgi/alerts Subscriptions: http://nej.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav Citations: http://nej.sagepub.com/content/21/2/125.refs.html
>> Version of Record - Mar 12, 2014 What is This?
Downloaded from nej.sagepub.com at GEORGIAN COURT UNIV on October 2, 2014
Editorial
Learning from Tuskegee: From moral outrage to integrative ethics
Nursing Ethics 2014, Vol. 21(2) 125–126 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014523106 nej.sagepub.com
Ann Gallagher University of Surrey, UK
The following saying, attributed to the Ibo people, captures well the themes of a range of experiences I have had since writing the last Editorial: Not to know is bad; not to want to know is worse; not to hope is unthinkable; but not to care is unforgiveable.1
I write this following a visit to the National Center for Bioethics in Research and Healthcare and the School of Nursing at Tuskegee University, Alabama, United States. At this time, we are also preparing for the launch of our new International Care Ethics (ICE) Observatory at the University of Surrey, in collaboration with the Ethox Foundation. The ICE Observatory will replace the International Centre for Nursing Ethics (ICNE). The history of Tuskegee University is intertwined with the history of slavery and the emancipation of African Americans. The first principal of the then school at Tuskegee, Booker T. Washington, was born into slavery and witnessed the reading of the Emancipation Proclamation in 1863. His autobiography details the life of a man, without bitterness, utterly committed to the transformative potential of education to improve the conditions of marginalised groups and the need for service to local communities.2 For one movie perspective on this period of American history, readers should see the recent film 12 Years a Slave, which shows the dehumanising impact of slavery and the complexity, cruelty and perversity of master/slave relationships in the southern states of the United States.3 The establishment of the National Center for Bioethics at Tuskegee University in 1999 followed another exploitative historical episode, this time relating to research ethics in the 20th century. The centre was supported by Executive Order, following an apology to research participants, from US President Bill Clinton in response to the exposure of the US Public Health Service (USPHS) Syphilis Study at Tuskegee.4 The study ran from 1932 to 1972. In all, 399 Black African Americans who were infected with syphilis were recruited into the USPHS study, designed to study the natural progression of syphilis, without being told the true nature of the study or that treatment was available following the discovery of antibiotics in the 1940s. Conversations with Tuskegee University staff and students, and subsequent reading, confirmed the importance of interdisciplinary bioethical perspectives. The scope of the discussion of bioethics was wide-ranging with reference to historical, sociological, economic and faith perspectives and relating to race, class, gender, age and sexual orientation, particularly as related to health and flourishing. A definition of this broader approach to bioethics is proposed by Tuskegee bioethicist and professor, Stephen Olufemi Sodeke, as follows: Corresponding author: Ann Gallagher, Faculty of Health and Medical Sciences, International Care Ethics (ICE) Observatory, University of Surrey, Guildford GU2 7TE, UK. Email: [email protected]
Downloaded from nej.sagepub.com at GEORGIAN COURT UNIV on October 2, 2014
126
Nursing Ethics 21(2)
Integrative bioethics is the science of life struggles, survival, and flourishing, particularly in the environment of the United States where the seeds of race, ethnicity, gender, class, culture and spirituality have flourished (for good or ill). Essential to the public’s realisation of a humanly lived life is good health and health behaviours [ . . . ] We surmised that an integrative bioethical blending of historical, practical, and ethical considerations of issues, behaviours and actions is necessary to ensure defensible and appropriate responses, social policy and law.5
Reading and listening to accounts of exploitation, deception and cruelty can, understandably, lead to moral outrage and questions such as: How can the acceptance of slavery in a relatively developed society in the mid-19th century be explained? How can we avoid violations of the human rights of research participants, such as that which occurred in the USPHS Syphilis Study at Tuskegee? And how could it happen that a nurse, Eunice Rivers Laurie, was instrumental in keeping research participants ignorant of the true nature of the USPHS study and of the possibility of treatment? In relation to the last question, the author of a book about the USPHS study, who had interviewed Nurse Rivers, said that ‘pondering her life had increased my tolerance for moral ambiguity and had helped me to understand why good people sin’.6 I feel privileged to have had the opportunity to learn more about the historical, sociological and moral context of discriminatory practices, directly from Tuskegee colleagues. Increasing our understanding from reading and the arts also prevents us from not knowing. The Ibo saying, cited at the beginning of this Editorial, also reminds us that we need also to want to know and understand, not to lose hope in the human potential for good and the possibility of positive change in healthcare, research practice and in society at large. Sodeke’s description suggests that integrative ethics could be the approach to bioethics that is needed:7 as the science of survival with concerns about social and environmental justice, urges us to develop the motivation, seize the opportunity, and demonstrate the willpower to accomplish what needs to be done.
We need to move beyond moral outrage and strive to understand societal, organisational and individual acts of injustice and cruelty and, crucially, the factors that make social justice and care endemic and sustainable. This understanding needs to be developed through research, enabled through education and applied to all care practices. Such will be the work of the new International Care Ethics Observatory. ‘Not to care is’, indeed, ‘unforgiveable’.1 Our task therefore is to revalue care and to make its importance, significance and ethical complexity not just visible but dignified and rewarded appropriately. References 1. Elders MJ. Foreword: the search for the legacy of the USPHS syphilis study at Tuskegee. In: Katz RV and Warren RC (eds) The search for the legacy of the USPHS syphilis study at Tuskegee. Lanham, MD: Lexington Books, 2011, pp. ix–xiv. 2. Washington BT. Up from slavery: an autobiography. BLN Publishing (undated). 3. 12 Years a Slave. http://www.theguardian.com/film/movie/156376/12-years-a-slave 4. Warren RC. Healing the sin-sick soul. In: Katz RV and Warren RC (eds) The search for the legacy of the USPHS syphilis study at Tuskegee. Lanham, MD: Lexington Books, 2011, pp. 141–151. 5. Sodeke SO. Tuskegee University experience challenges conventional wisdom: is integrative bioethics practice the new ethics for the public’s health? J Health Care Poor Underserved 2012; 23(4): 15–33. 6. Jones JH. Of thanks and forgiveness. In: Katz RV and Warren RC (eds) The search for the legacy of the USPHS syphilis study at Tuskegee. Lanham, MD: Lexington Books, 2011, pp. 19–27.
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