Ethics in Public Health Practice in India

198 Pages·2018·2.574 MB·English

by  Arima Mishra, Kalyani Subbiah

Arima Mishra · Kalyani Subbiah Editors
Ethics in
Public Health
Practice in
India
Ethics in Public Health Practice in India
Arima Mishra • Kalyani Subbiah
Editors
Ethics in Public Health
Practice in India
Editors
Arima Mishra Kalyani Subbiah
School of Development International Health Program
Azim Premji University Curtin University
Bangalore, India Perth, Australia
ISBN 978-981-13-2449-9 ISBN 978-981-13-2450-5 (eBook)
https://doi.org/10.1007/978-981-13-2450-5
Library of Congress Control Number: 2018958623
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Foreword
Now we feel ethics is everywhere (Comment from a student reported in Chapter 10)
This book’s creation comes from a meeting that was held at Azim Premji
University, Bangalore, in 2014 to address public health education where ‘the need
for conscious nurturing of ethical values of public health’ was stated and the con-
cept of ‘public health ethics as an enquiry’ debated. The words enquiry, values and
conscious are the key in the role of education in public health ethics in the twenty-
first century. How do we help students to be inquisitive about public health and to
enquire into difficult ethical dilemmas? How do we work to instil values and what
should they be, and how do we help raise their consciousness of the issues and
importance of public health ethics as a subject?
In the first chapter, it says that ‘public health ethics as a field of enquiry is at a
nascent stage in India’ with its knowledge and wisdom slowly emerging and yet, in
terms of ancient philosophical wisdom as well as important case studies that highlight
local, national and international issues around public health ethics, India already has
much to teach each of us about life and death, about health and disease, about commu-
nity and population and about how each of these issues relates to public health and to
ethics. The scale of the Indian situation in terms of land and population brings to the
fore the major international issues of the day in ethics, and each of the chosen authors
provides an important unique perspective on public health ethics in India with chapters
focussing on teaching, rights, programme design and evaluation, analysis of public
health programmes, the role of public health ethics in the design of non-public health
programmes, data ethics, ethics issues in gender and reproductive technologies, qualita-
tive research on health systems, teaching ethics in medical college and finally a descrip-
tion and analysis of the course in public health ethics at the Azim Premji University.
Important themes emerge from these chapters: education and the human condi-
tion, self-reflection and relationship; community, values and education; and the
individual versus the population which is at the heart of public health ethics and
how to balance the needs of the individual versus the needs of the population. The
powerful theme of education dominates the book and provides insights into how to
enquire about ethical values, how to nurture them and how to work with them in
public health situations.
v
vi Foreword
Themes that Emerge in the Book
The Individual Self
The individual self is highlighted in the book. Who am I and what role am I playing
in public health? Am I an educator, a student, a medical officer or a data analyst, and
what values do I bring to my work in public health? Each of the authors provides a
different perspective.
Ethics is about actions, and therefore, in a sense, everything we do is about ethics
as is noted in the quote to this foreword from a student at Azim Premji ‘now we
think ethics is everywhere’. Another student said ‘ethics is humane and it is impor-
tant that one looks within first before trying to address any others issues out there’.
It is essential therefore that each of us does just that. The better each of us under-
stands ourselves, who we are and our roles in public health, the better for the com-
munities and populations that we serve.
However, as ethics constantly reminds us, knowing ourselves and being better
able to empathize and relate to others only happens through constant self-reflection
and debate. The individual self-reflection that is highlighted in Chaps. 1, 6 and 10 is
paramount and an important discipline for each of us in our public health work.
Self-reflection is part of qualitative research methods, and qualitative researchers
understand this with Chap. 6 on qualitative research in health systems highlighting
this point. However, it should also be an important discipline in epidemiology and
in those of us who work with quantitative data sets where there is a need to ponder
and reflect on all those individuals that are present in our population datasets and to
try and understand how our actions (our ethics) will affect each one of them. It is a
hard task, but I would say that for public health practitioners, this is an essential task
and one that is never completed.
Relationship
Of course relationship is important in public health because our roles and actions
have the potential to affect a large number of individuals. So, our ability to under-
stand and to relate to others and to become more sensitive and to be better able to
empathize with the issues, experiences and outcomes of people in different contexts
is important. The importance of vulnerability in life and vulnerability in public
health is highlighted (Chaps. 2, 5, and 8). How are people who sit at the edge, on the
margins of our societies, treated? What are their rights, and what are the ethics and
actions that are taken by practitioners to ensure that their vulnerability is respected
and treated accordingly?
Foreword vii
Communities
As we relate to others so we can then better relate to communities. Participation of
communities in all the stages of research is essential (Chap. 3) as is the need for
process and dialogues that is needed to find the best way forward in public health
decision-making (Chap. 4). This is challenging but essential as ‘The population or
community perspectives of public health is critical’ (Chap. 1) with the importance
of local decision-making in designing programmes to find the appropriate action
coming to the fore in the environmental ethics issues surrounding the endosulfan
tragedy (Chap. 5).
Values
What are the values that support our work? The importance of the high ideals and
principles of medical ethics is noted in the intention of St. John’s Medical College
in Bangalore ‘to instil the principles of moral values into the student so that they
could maintain high professional standards and integrity of life’ (Chap. 9). The
ancient wisdom of India present in the ancient codes of ethics and values that are
presented in classical Ayurveda is also mentioned in this chapter. Ayurveda is about
the ‘knowledge of life’, and its wisdom is profound and its knowledge and educa-
tion need to be brought forward into current medical and public health ethics.
Ayurveda understands what health is, unlike our Western systems that are about
disease and not about health.
Education
How public health ethics is taught is a challenge. The course at Azim Premji has
clearly been very successful, and Chap. 10 explains the constituents of the course
and its success. There are some wonderful insights from the students: ‘This course
has been a personal journey for me where I have constantly thought within myself
to understand the confusion that emerged……’; ‘I had never thought that one needs
to ask so many questions in the understanding of what happens and why it
happens’.
The course is clearly challenging and asks difficult questions like ‘What are we
training public health professionals for? Is it for the market or to be able to respond
to national needs?’ With the increasing medicalization of life happening around the
globe, we need to increasingly ask basic questions around education and training
and to ensure that the values inherent in public health practice through its service to
communities are honoured. Public health is not about the market or about profit, it
is about life, individuals, communities and well -being.
viii Foreword
Wisdom and Values that Are Important to Public Health
Ethics
I agree with the student who says that ‘ethics is everywhere.’ The thinking and feel-
ing self that is described in so many different places in this book provides us with
the knowledge of life that includes important insights into ethics, roles and values.
How do I relate to myself and to others, and what values are important in my rela-
tionships with individuals and with communities? The ancient Indian local health
traditions provide enormous insight into the self, to health (‘swastya’, bring rooted
within) and highlight the importance of values in individuals, in communities and in
societies. These are the values that relate to the outside world through relationship
(Yamas, non-violence, truth, non-stealing, celibacy/marital fidelity and non-
possessiveness) and to the internal values that each of us holds within ourselves
(Niyamas, purity of body and mind, contentment, self-discipline, self-reflection and
true self). These values are essential, as are the roles of feeling, of empathy and of
compassion in making us human. The teachings also indicate that before any action
is taken, each of us needs to reflect on all these parts of ourselves. So, ‘everything is
ethics’!
Conclusion
I have been waiting for a book like this and delighted to be able to write a Foreword.
India has such a wealth of knowledge in ethics and public health, and the rest of the
world needs more Indian writing on public health ethics, more writing that brings
forward the ancient knowledge of the country and the ancient wisdom and teachings
that percolate through life and the Indian system. This book is a wonderful start to
this process to ensure that public health ethics is no longer ‘nascent’ in India, and I
believe that the publication of this book suggests that India has begun to take a pow-
erful role in bringing the importance of public health ethics into the foreground of
health and health care, and I hope this book is simply the start of more publications
on ethics from Indian researchers and public health practitioners.
Professor of International Health John D. H. Porter
London School of Hygiene and Tropical Medicine
London, UK
July 2018
Preface
Public health, by its very definition, concerns and engages with the health and well-
being of a population and focuses on the curative, preventive, promotive and reha-
bilitative aspects of that population’s health. These aspects rely on the allied values
and goals of equity, social justice and human rights. While it is acknowledged that
ethics is at the core of achieving the goals of public health, ethical analysis is mostly
assumed than consciously nurtured and applied in public health practice. This edited
volume on ‘Ethics in Public Health Practice in India’ has been conceived to locate
ethics at the centre stage of public health practice. In the process, it seeks to expli-
cate ethical analysis of public health issues, deliberations and resolutions.
The idea of this volume germinated in a visioning meeting on public health edu-
cation in India organized by us at the Azim Premji University in 2014. The meeting
was sought to be the first in a series of such consultations in order to identify the
niche for Azim Premji University to contribute to public health education, research
and training in India. More than 40 participants representing 20 institutions (univer-
sities, civil society organizations and research institutes) having long-standing
engagement with public health/community health participated in this deliberation.
The meeting provided a reflective forum for reinstating the community/population
orientation of public health, the concerns for increasing medicalization, technologi-
zation of health, high out-of-pocket expenditure in meeting health needs and persis-
tent health inequities. It was strongly felt that public health has a ‘social’ purpose
(unlike medicine that speaks to individual forms of care) that puts the ‘public’
(attentive to the needs of marginalized communities) and ‘health’ (all components
of health) at the centre stage. Hence all components of public health practice (pol-
icy, program planning/implementation, research, monitoring and evaluation, train-
ing) must contribute to this purpose. This discussion hence established the need for
conscious nurturing of ethical values of public health. This visioning meeting was
followed by several formal and informal consultations with public health profes-
sionals in taking some of the discussions forward. These discussions brought out the
need for explicit deliberations of public health ethics and the limitations of current
frameworks of clinical and bioethics to adequately capture public health issues and
ix
x Preface
concerns. In the same vein, internationally available ethical guidelines and protocols
remain fraught with the difficulties of context-specific applicability in settings that
have social, religious and legal realities that are unique and distinct from one another
in a country setting like India. This volume grew out of this collective concern and
felt need for unpacking public health ethics as a distinctive field of inquiry. As part
of this effort, we launched (2016–2017) a short 1-week training program on Ethics
in Public Health Practice for in-service public health professionals. Most of the
contributions to this volume came from the sessions facilitated by public health
scholars during this training program. Additionally, we reached out to others whose
work significantly sought to contribute to shape this evolving field of inquiry.
The volume draws on ten original contributions from academics and practitio-
ners in varying roles and long-standing engagement with public health in diverse
settings within India. The contributors are drawn from different disciplines and
areas of work including anthropology, sociology, health communications, gender
studies, economics, epidemiology, social work and medicine with a shared commit-
ment to the community orientation and societal understanding of public health that
locates health necessarily in its social/cultural/political determinants. Their perspec-
tives and experience, as a result, span a gamut of ethical enquiries including ethics
and rights; complex health systems; design, implementation and evaluation of pub-
lic health (and non-health) programs; research and advocacy on gender and new
reproductive technologies; managing datasets in the information age; capacity-
building; and teaching of public health ethics in medical schools and universities.
Public health has evolved as a discipline with much stronger and robust engagement
with contributions from social sciences, and this volume reflects this interdisciplin-
ary orientation of public health.
The volume runs through four parts. Part I provides an introduction to the field
of public health ethics and analysis and moves on to present the juxtaposition of
rights and ethics and specific forms of contestations in the legal, social and health
systems contexts in India. This part seeks to throw light on the key manifestations
and influences of history in public health ethics in one platform. It also intends to set
the foundation to better understand the echoes and dissents of this history today.
Part II emphasizes the complex nature of programs in public health through cases
that illustrate both their possibilities and pitfalls in design, enquiry and analysis,
stakeholder management, adverse events, monitoring and evaluation. This part’s
unique contribution is to introduce ethics into design, implementation and evalua-
tion of public health programs. Despite the fact that programs have been the pre-
dominant modes through which policies are operationalized, ethical lens in the
analysis of public health programs is assumed or absent. Programmatic challenges
and disconnects are diagnosed, at best, as implementation failures and not as ethi-
cal/moral failures.
Part III discusses ethical issues in different kinds of public health research set-
tings and themes. These include the risks and benefits of large datasets in a con-
stantly changing information age and the need for vigilance in the management of
data pools with confidential and private health information. The part also includes
reflections on doing qualitative research in/on health systems and its complexities