Gry Mile Jakobsen Kidney Disease, Transplantation and Trade
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Gry Mile Jakobsen
Kidney Disease, Transplantation and Trade
A literature review study exploring similarities
and differences in renal transplantation
policies and trade in India and Iran
Master Thesis in
International Social Welfare and Health Policy
Autumn term 2009
Faculty of Social Science
Oslo University College
1Abstract
The issue of organ trade in India and Iran has been a great concern in The World Health
Organization, but there have not been many studies nationally or internationally which could
highlight this health problem globally. How kidney vending in India and Iran affected poor
people in these countries are explored and discussed in this thesis. The relationship between
the theories poverty, health risk and social risk are elaborated and compared with my findings
in the literature. The main objective of this qualitative research is to highlight and compare
the differences and similarities of the legal and illegal kidney trade in India and Iran.
To gather information about this topic, it has been used a literature review of already existing
empirical research and articles. The collected data is examined in order to find reliable and
quality literature about kidney vending in India and Iran. Both Iran and India had a large
number of patient with end-stage-renal-disease (ESRD) coming from abroad to buy a kidney
in their country. This purchase of kidneys were only possible because they have many poor
people who are desperate and in need of money and therefore willing to sell one of their
kidneys. In 1988, Iran changed their laws and allowed people to sell a kidney to the state.
India changes the law in 1994 and forbid selling of organs, but allowed people to give one of
their kidneys to another person for an altruistic reason. In this thesis, I will seek to find how
India and Iran have managed to prevent organ vending and how this has affected poor people
who want to sell kidneys.
2Acknowledgement
To complete this master program and my final thesis, there are many people who have helped
me and encouraged me through this time.
First of all, I will deeply thank my supervisor John David Kisuule Alao for following me up
through the work with the thesis, guided, learning and encourage me the whole time. With
your inspiration and motivation I would not have managed to complete this study without
you.
Special thanks go to the librarians working at Vestre Viken Helseforetak, sykehuset
Buskerud, Linda Warhuus, for all your help and always willing to find things for me.
I also want to thank Sandra Ulvær for reading through the thesis and correction of my
English.
Last, but not least, I will thank my family for being patient with me through my whole period
of study.
Gry Mile Jakobsen
Drammen, January, 2010
3Table of contents
Chapter 1 Introduction
1.1 Background………………………………………………..6
1.2 Objective…………………………………………………..7
1.3 Research Question………………………………………...7
1.4 Theoretical Perspective……………………………………8
1.5 Relevance………………………………………………….9
1.6 Structure of the Thesis……………………………………..9
Chapter 2 Definition of Concepts
2.1 Kidney Buyer and Seller………………………………….10.
2.2 Risk……………………………………………………….11
2.3 Trust………………………………………………………12
2.4 Stigma…………………………………………………….13
2.5 Summary………………………………………………… 14
Chapter 3 Methodology
3.1 Introduction……………………………………………...15
3.2 Qualitative Research…………………………………… 15
3.3 Literature Review………………………………………. 16
3.4 Inclusion and Exclusion………………………………….19
3.5 Literature Collection……………………………………..22
3.6 Limitations……………………………………………… 24
3.7 Summary…………………………………………………25
Chapter 4 Iranian and Indian Transplantation Model
4.1 Introduction………………………………………………26
4.2 Iranian model……………………………………………..26
4.3 Indian model……………………………………………...29
4.4 Summary………………………………………………….32
Chapter 5 Discussion
5.1 Introduction………………………………………………33
5.2 Poverty and Kidney Sellers……………………………….33
5.3 Health Risk and Kidney Trade……………………………37
5.4 Social Risk Related to Kidney Trade……………………..43
5.5 Summary………………………………………………….51
Chapter 6
Conclusion…………………..……………………………………52
4References
5Chapter 1 Introduction
1.1 Background
The background for this thesis is to observe the relation between the growing concern of
people with renal failure and the lack of replacement organs, which would create a new life
for people with end-stage-renal-disease (ESRD). Globally, this is a concern in almost every
country in the world and many patients with ESRD die while waiting for a new kidney either
donated from a dead person (cadaveric transplantation), or as a gift from a living donor, for
example a relative or someone else. The World Health Organization (WHO) estimated in
2008 that 1.4 million people worldwide received renal treatment therapy such as
transplantation or dialysis (White, 2008: 161). The fact that a person can live a healthy life
with only one kidney makes it possible for a kidney to be given from one person to another.
The blood of a patient suffering from ESRD has to be cleaned of residual products and the
only way to do this is through a dialysis machine two or three times a week. As the patient is
dependent on this medical treatment to survive, it can create physical, mental and social
difficulties. Compared to kidney transplantation, dialysis is very expensive health service for
a country (White, 2008: 161).
As already mentioned, the shortage of available kidneys for transplantation is a great burden
to many countries all over the world. In China for instance, they use executed prisoners to
increase the donor pool and in USA, since 1999, around 30,000 patients have died while
waiting for a kidney, because the donation system is not well developed (Hippen, 2008: 2). In
some low and middle income countries such as India, Pakistan and The Philippines a business
has been created in selling kidneys from poor people to rich people, often from western
societies. Most governments in the world have forbidden commercialism in transplantation
surgery, but illegal activity still exists in some parts of the world with professionals like
nurses and doctors who are willing to be a part of such trade. Poor people in developing
countries are willing to take the risk and sell one of their kidneys to another person
(Shimazono, 2007: 955).
Poverty is a great concern in developing countries and one of the main reasons why people
sell a kidney. The World Bank has estimated that one billion people in the world live in
poverty, the majority of them living in low income countries. In 2004 the WHO Assembly
made a resolution and encouraged member states to take action against the organ trade and
6protect poor people from this business (Shimazono, 2007: 955). India and Iran are two of the
countries that are involved in kidney transplantation sale. However, as it will be discussed
later in the thesis, the policies adopted in these two countries are quite different. In Iran it is
legal to sell and/or donate a kidney to someone, but India the law forbids trade in human
organs. The different approach in policies must have an effect on people‘s lives, especially
the poor who are desperately in need of money and are willing to sell one of their kidneys to
solve family or personal economic problems.
1.2 Objectives
The main objective in this qualitative literature review study is to explore the similarities and
differences in renal transplantation policies and trade in India and Iran.
My specific objectives are:
1. To describe and analyze how the two transplantation models have developed in India and
Iran.
2. To reflect on how poor people cope with life after selling a kidney.
3. To compare similarities and differences in how operative the two models in India and
Iran are in relation to each other.
1.3 Research Questions
My research questions are:
1 Why do poor people in India and Iran sell a kidney to a patient with ESRD?
2 What are the social and health risks related to kidney transplantation in India and Iran?
And are they different or not?
3 Are sellers in India and Iran different when it comes to social categories and economic
status?
74 In what way can a patient with ESRD be able to buy a kidney in India in spite of it
being illegal?
5 Is the Iranian model preventing kidney sale or not?
6 What role does religion play in kidney sales and transplantation policy in India and
Iran?
1.4 Relevance
The relevance of this literature study is to describe and explore how poor people in India and
Iran are connected to organ trade and to highlight the risk they are taking with their life.
Health policy is an important issue when authorities are creating transplantation programs and
it prevents commercial organ trade in special developing countries. India and Iran have
revised their legal framework according to kidney sale and studying how this is done can be
of importance to show other health workers, social scientists, non-Government organizations
and the Transplantation Organization, that organ trade is still a great concern and a burden to
the international society. Shimazono expresses in the WHO Bulletin that organ trade is an
important health policy issue and that it needs to be more highlighted and make people aware
of this business and the exploitation of poor sellers. He also elaborates that: ―there is an
urgent need for further medical and social scientific research‖ (Shimazono, 2007: 960).
Additionally, there is a lack of studies addressing the long term health risk to which poor
kidney sellers are exposed. This study will try to show how health and social risk are
connected to each other and that poverty is one of the main reasons for people to sell a kidney.
Another main relevance is that there are no previous studies that have compared India and
Iran when it comes to sale of kidneys and this is why I have tried to find studies with the most
similar topics as possible. No other article or study has previously highlighted the actors in
legal and illegal kidney transplantation policy or trade. More studies on this topic are needed
to make people and policy makers aware of the suffering to which poor kidney sellers in India
and Iran are exposed. The changes in a poor seller‘s life after surgery must increasingly be
followed up in the long term to see how their physical, mental and social life is affected.
81.5 Theoretical Perspectives
In this thesis the theoretical focus will be on the concept of risk. Therefore in chapter 5, I will
discuss this concept by relating it to health and social risks which people experience or are
exposed to after selling their kidneys. Also in my discussions, exploring the concept of
poverty is very vital. Thus in developing countries like India, Iran etc, due to poverty people
take risk decisions or get involved into risk actions. This is not only in relation to kidney
trade but even in relation to other actions and/or behaviours such as stealing, prostitution,
drug trafficking etc. Therefore through my discussions I will try to illustrate how poverty is a
starting point for health and social risks for people who are sell their kidneys.
1.6 Structure of the Thesis
The thesis is compiled in 6 chapters, the first of which has already been presented in the
introduction and background information needed for further approach to the rest of the
research. The objectives, research questions, relevance and theoretical perspectives have been
presented here.
Chapter two defines the key concepts which are used throughout the thesis. The kidney buyer
and seller are defined and the behavior of risk is discussed in relation to health and social
relationships involved in the legal or illegal kidney trade. Trust is a concept between the
actors in the kidney sale and this is elaborated and described in relation to kidney sellers.
The third chapter brings detailed information of the methodological process in this study and
discusses qualitative research methods in a literature review. Quantitative research methods
will also be looked into as many of the articles used contain such processes. My choice of
collecting literature data, how this has been searched for and the limitations in this thesis will
be described. The validity and reliability in the used literature is defined and elaborated.
In chapter four the findings of literature on kidney trade in Iran and India will be elaborated
and explored on how these countries have built up their kidney transplantation models.
Chapter five discusses the theoretical framework in relation to poverty, health and social risk,
observing how these theories are connected to each other in the business of kidney sale.
Chapter six presents the main conclusion of this thesis.
9Chapter 2 Definition and Concepts
1.1 Kidney Buyer and Seller
Trade is a concept which many people connect to business in the financial world, but trade
exists on many levels and in many different economic sizes. A Google search on the Internet
for ―trade‖ gave ―voluntary exchange of goods, services or both‖. Trade is also expressed as
market and commerce. In modern trade, money has been increasingly used as an exchange
and the result of this is the creation of buying and selling. To define the concepts of organ
trade will be that people purchase with human body parts. Organs like kidneys can be sold
alive or from dead bodies, for instance following a car accident.
The literature for the most part refers to the patient with ERSD as the recipient. The recipient
is the person who is given or receives a new kidney from a dead human, a related family
member or a close friend, in order to eliminate an illness and thus achieve a better quality of
life. He or she does not have to pay or give anything back and is thus a recipient because a
donor gives without expecting reciprocation. However, when trade of organs and payment for
kidneys are brought into this issue, the recipient is no longer a receiver, but a buyer. In India
and Iran such transactions involve money directly or indirectly and that is why these
recipients in my view will be referred to as buyers.
The expressions to donate or to sell a kidney to another person can easily be confused with
one another, especially in literature where both are being used, depending on how these words
are defined. A Google search on the Internet for ―donate‖ gave many results connected to
donation to non-Government organizations that either request money donations to poor
people, or make people sign donor cards which state that they are willing to donate parts of
their body after death. In this case the definition is that something is being given away
voluntarily, and not something that has to be paid for. The donation of a kidney to an
unknown person has to be without payment and without any kind of coercion. Donation is
often connected to transplantation surgery when family members or friends donate a kidney or
part of a liver to a sick relative. However, although it is possible that some people are willing
to donate for an altruistic reason because they want to do something good for someone who is
ill, this is still without coercion or payment and they do not expect anything in return.
10To define the concept of a seller is to describe it as the opposite of a donor. A seller expects
something in return when purchasing with goods or body parts. The reason for selling is the
need for money and when people do not have anything to sell but their own body, they
purchase with organs. I will define people that sell one of their kidneys to an unknown person
to be a seller, but in many articles I have read, the authors refer to these people as donors.
Even WHO describes sellers as donors when they write about the ―dilemma over live-donor
transplantation‖ (WHO, 2009). From the WHO Bulletin, Shimazono (2007: 958) is also
paying attention to organ trade, but uses the words: ―paid organ donation on the donors‖. In
the Iranian article from Kermanshah, Zargooshi (2001: 386) uses the word donors, but
expresses: ―the majority of donors in Iran are vendors and not donors‖. In view of this, I will
use buyer and seller when I refer to organ trade in India and Iran.
2.2 Risk
Although the language of danger has turned into the language of risk, it seems that through
history, the word risk has changed. Also the means of measuring and communicating risks are
in many cases new. Thus the phenomena which were previously referred to as hazards,
dangers, or uncertainties are today labelled as risks. This means that disputes about risk have
become endemic and self generating. Nature is no longer regarded as the main reasons for
risks to health. Most risks can be seen as created by humans.
Douglas (1992:40) refers to a risk as a probability of an event combined with the magnitude
of losses and gains it will entail. Often the ‗public‘ does not see risks in the same way as the
experts do. This means that the types of risks people take and how they cope with them are
related to their social system and what they define as risks. Thus although some people try to
avoid some risks, others may not. For example, according to World Health Organization
(2002: 5) healthy and wealthy people from developed countries seem to be more concerned
about their risks to health than poor people in poor communities. But it is also important for
us to understand that in some cases or situations, the risks people take are associated and
influenced by the conditions that they may be in at that particular time. For example, as I will
illustrate in this thesis poor people in India and Iran take risks by selling their kidneys because
they may have no other economic avenues for survival or to solve their immediate financial
needs.
112.3 Trust
One definition of trust is: ―the optimistic acceptance of a vulnerable situation in which the
trustor believes the trustee will care for the trustor‘s interest‖ (Gilson, 2006: 360). According
to Gilson this definition contains key words which are related to trust; relation, voluntary,
vulnerability and risk and expectation. All of these words are also connected to the trade of
organs. Sellers and buyers have expectations regarding the health care deliveries. They trust
that professionals will give them an equal treatment as anyone else and that the surgery is
carried out in a hygienic and technically correct manner. Trust will here be related to
minimizing of health risk, for example, to prevent infections after surgery and to reduce pain.
Social relations involved in trust can be on various levels, for instance between family
members, nurse to patient or politicians to their citizens. Poor people are vulnerable in many
ways and especially when they are willing to sell a kidney to another person, they really need
to trust the different actors in the organ trade.
Another relation in trust can be between husband and wife if one of them sells a kidney. The
trust they have in each other can be an important part of their lives after surgery. The degree
of honesty in the seller and his or her experiences depends a lot on their relationship and the
degree of their trust in one another. Trust in kidney sale ought to be a part of an open process
that both husband and wife take into consideration before and after selling. However, this
aspect of trust will be of social character reflecting how trust has been created in a family,
between neighbors or in the community. Trust in their own community and family is
extremely important when poor people decide to sell a kidney. If there is lack of trust in social
relationships as mentioned above, stigma can be a serious result and of great importance to
the seller. Stigma minimizes people‘s ability to participate in society and family
relationships.
Gilson (2006: 361) describes that; ―civic trust is influenced by social policy and system‖. The
relation to this, in my study, will be to discuss the legal transplantation model in Iran. In what
way can sellers trust that the government gives them the right information about surgery, can
they trust this information and that the authorities will act the way they have promised.
Health programs should idealistically contain ethical and moral values that give every citizen
equal health care and opportunities within the system. Political trust has, according to
12Halpern (2005: 180), important factors that have to be present if a government can give trust
to their people. One main concept here is honesty and openness in public affairs.
In this study, trust will be seen in relation to ethics because this is a very important value to
me in my daily work as a nurse. Health care providers must try to give every patient trust in
their relationship, so that each patient can feel that they are special, treated as an individual
and that ethical values are followed. Although the concept of trust has several meanings at
different levels, in this thesis the concept of trust will be related to poverty, health and social
risk.
2.4 Stigma
The concepts of stigma and discrimination will be used a great deal in this thesis. Thus, it is
important to illustrate how sellers cope with their everyday life in the society after surgery. In
view of this, I consider it necessary to define and discuss what is stigma and discrimination.
Stigma and discrimination of people have different forms and levels in society and occur
universally in every society, such as; in society at the workplace, between men and women, in
families, public places, in the health sector between doctors and patients, nurses and
assistants, sportsmen and trainers etc. Cultural norms and values in a society create stigma
and discrimination in fields of, for instance, religious beliefs, fear related to death and illness,
lack of understanding and information, prejudice etc.
Goffmann (1963) defines stigma as a significant discrediting attribute possessed by a person
with an undesirable difference. Stigma is a powerful means of social control applied by
marginalizing, excluding and exercising power over individuals who display certain traits.
Katz (1979) states that stigma contains certain negative characteristics and a reduction of the
possessor of the characteristics. Problems such as isolation, rejection, prejudice and
discrimination are issues that people try to avoid in interactions with other individuals who
deviate from their own group norms both physically and psychologically.
There are two main types of stigma; self stigma and enacted stigma. Self stigma has to deal
with the feelings individuals have according to their own body and beliefs about themselves
and in relation to others. These feelings concern shame, self hatred, fear and anxiety etc.
Issues like these make the individual avoid relationships with others, which can result in
13isolation from society and family. As I will illustrate in chapter five, in the case of kidney
trade this reveals how sellers cope with their life after surgery and how they manage to be a
part of their family and society. If they blame themselves for their actions, and feel shame
and guilt, their opinions about themselves can lead to isolation and stigma.
Enacted stigma is related to experiencing discrimination from others within a family or
society in which poor people live. Individuals can be stigmatized by others for example in due
to age, gender, religion, color etc. Prejudice from others is one main cause of discrimination
and in the kidney trade these prejudices partly lie in people‘s religious beliefs. I think that
stigma in this two countries has some similarities and differences.
2.5 Summary
In this chapter I have defined the concepts which I consider important in this thesis in relation
to kidney trade in India and Iran. The concepts of kidney buyers and sellers are only related
to vending of kidneys and not donation of organs. Risk and trust are important factors in a
kidney seller life in relationships with their families, friends and societies. To put themselves
at risk, kidney sellers are exposed to discrimination and stigma. These concepts will be
discussed and elaborated further in chapter five.
14Chapter 3 Methodology
3.1 Introduction
This chapter outlines the research process and collection of literature. As mentioned, this is a
qualitative study with research questions which are conducted in a literature review. Here, the
collection of articles will be presented according to the method of a literature study. Why this
method has been chosen and other methodological considerations will be discussed and
elaborated. The criteria for selection of data will be described as well as the way in which the
different searches in books and on Internet sites are used.
3.2 Qualitative Research
Science is a systematic process for answering questions concerning issues in the world by
using research methods to achieve more knowledge in various investigations. In social
science today, researchers use methods to investigate individuals, societies and social
processes to obtain more knowledge about the social world. A research method is a technique
to structure and analyze information in a study and there are two alternatives for developing
information available in the world. The focus on these two methods lies in one traditional
way, quantitative research, and another on a more naturalistic, questioning approach,
qualitative research (Polit, 2008: 15). In this study the qualitative research method will be
focused on elaborating and explaining the kidney trade in India and Iran. To define a
qualitative research method is:
―Methods such as participant observation, intensive interviewing, and focus groups
that are designed to capture social life as participants experience it, rather than in
categories predetermined by the researcher‖ (Chambliss and Schutt, 2007: 333).
In order to reach the goal in social science there are four different ways to carry out project
study: ―description, exploration, explanation and evaluation‖ (Chambliss and Schutt, 2007: 8).
Exploratory research is often used in qualitative methods and seeks to explore through
questions and interviews on how people‘s feelings are related to their actions and concerns,
―words rather than numbers‖ (Chambliss and Schutt, 2007: 10). Defining exploratory must be
according to Chambliss and Schutt: ―to find out how people get along in the setting under
15question, what meanings they give to their actions, and what issues concern them‖ (2007: 10).
Therefore, in this study I have used different studies from India and Iran to explore the
meanings and feelings people have about the kidney trade and what issues concern them after
selling.
Major features in a qualitative research in social science are described by Chambliss and
Schutt as observation, participation and interviews (2006:165). Many qualitative studies
involve interviews which express feelings, experiences in human lives and perceptions of an
individual‘s behavior. Sometimes a special group is in focus and the interview can be
structured or unstructured in various interview methods. The most important issue in
qualitative method is when the data collection is gathered in the field, and Chambliss and
Schutt define this as ―field research‖ (2006: 165). Research often begins with an event of
interest and continues to provide new information and insights into the research question. By
asking questions about the phenomenon, the main significance emerges, ―the attempts to offer
understanding of the underlying causes or full nature of a phenomenon‖ (Polit, 2008: 21). In
this study this will be in terms of trying to understand why poor people vend with kidneys and
explore how the society in which people live reacts to such behavior.
3.3 Literature Review
A literature review can be defined as a study of already existing knowledge about a special
topic of interest where the researcher seeks to prepare and analyze the collected literature into
a social context (Polit, 2008: 757). The purpose of literature varies a lot in different studies
and the researcher has to identify the problem and ask questions about the topic. The
researcher must be familiar with all the available data about the topic, before analyzing the
data and has ―to be confident of preparing a comprehensive state-of-the-art review‖ (Polit,
2008: 106). In my point of view, the researcher in a literature review becomes an expert on
his or her theme. One has to be acquainted with all available literature concerning a special
topic and it is extremely important that one critically reviews all studies and collected articles
before presenting findings and discussions on the subject. In this thesis, this is associated to
the way in which I have defined my problem and the kind of articles and studies that I have
chosen. The interpretation of the literature has to be carried out in relation to vending of
kidneys by poor sellers. By using primary sources from different studies on this topic, this
16thesis can hopefully be a basis for new research by highlighting how much poor people suffer
and how poverty is a main reason for selling a kidney.
The advantage of using the method of literature study is that I am able to compare various
articles and studies from different researchers on the same topic. Therefore, reading so much
literature on one special topic makes the literature researcher a specialist within this
framework. However, there can be a disadvantage in the fact that this collected material can
be over interpreted and already widely known, which provides the researcher with a problem
of explaining his or her findings in an way that the general public will understand. The quality
of a literature study depends especially on two certain and significant criteria to achieve
qualitative measurement: reliability and validity.
Measurement, quality and adequacy are some instruments to use and test the reliability in a
study. Reliability concerns a measure‘s accuracy and can be defined as: ―An instrument is
reliable to the extent that its measures reflect true scores‖ (Polit, 2008: 452). In this study, the
literature that is collected will be tested to see if it answers the research question being asked.
The literature concerning the kidney trade has to be in relation to my topic and questions.
One instrument is the key words which are used in the search for literature on the Internet and
web sites relevant to the topic, such as kidney sale, religion and ethics in organ trade.
Reliability refers to how precisely and consistently the information in a study is obtained
(Polit, 2008: 196). A study is reliable if it produces the truth about the chosen phenomena and
gives consistent answer to questions being asked (Chambliss and Schutt, 2007: 74). The
problem being investigated has to be connected to real life in order to be reliable and that is
why this study prefers to use primary sources. These sources have to be carefully read and
checked in relation to the origins of the researcher or authors, the kind of background they
have, are they doing this for some organizations or government, the kind of methods being
used and so on. Many articles in mass media are about the kidney trade in India but these are
not always reliable or use primary sources and must be checked before being used in a study.
Although Indian kidney trade exists, there are very few studies on this topic and some articles
and studies have not been taken into consideration because they are either too old, concern
donation and not the trade, or some come from other countries.
The key concept in this study has to be defined and used in the gathering of available
literature and a search for different studies on the topic has to be carried out to see if someone
17has done research on this topic before. The theoretical concept has to be in relation to the
chosen topic and research questions in a manner that makes it possible to bring the theory into
the discussion part of the study. The literature had to be tested so that the information about
kidney trade in India and Iran addressed my research question. I had to focus on the theme
and the defined concept. A definition on reliability: ―A measurement produced yields
consistent scores when the phenomenon being measured is not changing‖ (Chambliss and
Shutt, 2007: 334). The literature findings must answer the question of the study and be in
relation to the topic. For instance, findings on how buyers from Nepal manage to buy a
kidney from India, did not answer my research question.
How reliable a research is, can be illustrated in the relation between the researcher and the
seller in the kidney trade, on how the researcher managed to understand the meaning of the
seller‘s action in relation to the individual and the social context in which he or she lives. By
this I mean that I have to look closely at every study on this topic and how the research has
been carried out. In particular, consideration must be given to where the interviews have been
performed and if there are other persons present during the interviews. This can be a
significant factor that can influence the interviews, perhaps disturbing the interview so that
the question being measured does not produce a valid answer. For instance, in one study from
India the researcher asked if the seller was forced by another person to sell a kidney and there
was another person in the room during the interview. It can be difficult do give an honest
answer if the husband is present and he has perhaps coerced his wife to sell a kidney. The
critique will be that the researcher introduces his or her own opinion to the case and not only
the seller understanding of his or her life.
Validity is a concept in every study and is related to reliability, but it is more: ―complex
concept that broadly concerns the soundness of the study‘s evidence‖ (Polit, 2008: 196). It
concerns the measurement of how well this is founded and if it can be used as an instrument
to measure what the researcher really intended to investigate. To define validity can be: ―the
degree to which an instrument measures what it is supposed to measure‖ (Polit, 2008: 457).
The validity of this study will be if the chosen literature is able to answer the question or
problem stated earlier in this thesis. Inquiry or research proposal needs answers related to the
question and these must be consistent in validity or truth. One question in this study
addresses the reason why poor people sell a kidney to another person. The answer to this must
be searched for in different literature from India and Iran, and this has to be critically
18reviewed before considering its validity. I have to ask if it gives the answers it is intended to
measure. Does the literature give me the knowledge I need to answer the research questions
about poor kidney sellers and not about other organs or about donation and not selling. That is
why the researcher has to be creative in finding literature from different sources, like web
sites, articles and books, to narrow the topic down and get valid answers to the question.
Validity is one instrument to evaluate if the study is of good quality, but it can be difficult to
establish because there are no clear equations that easily judge the validity of a research.
(Polit, 2008: 458). Therefore, the more evidence and studies that can be gathered about
kidney trade in India and Iran, the better the quality, but I have scrutinize the studies and see
who has written them, the origins of the researcher, or whether the studies have been ordered
from some organizations, government or company. The reliability and justifiability of these
people must be taken into consideration.
―Validity is the state that exist when statements or conclusion about empirical reality are
correct‖ (Chambliss and Schutt, 2007: 340), but how can I be sure that everything is correct
when the study is a literature review and I have not collected the data myself? To rely on
studies by others must be a necessary part of a literature review and the collected data has to
be carefully evaluated before being taken into consideration.
3.4 Inclusion and Exclusion
Criteria for doing a good literature review have to be systematic decisions by the researcher of
what to include and exclude in the data (Polit, 2008: 108).
Including data is the sample of the literature that is found, checked and evaluated as valid. In
the start of this thesis, many different approaches to kidney trade were tried and evaluated
before resulting in this specific topic. There are many actors in kidney trade and many
countries in the developing world are active in the buying and selling of kidneys. My
including sample was to narrow these vast numbers down and take into consideration who in
this business I wanted to study. At first, I tried to look at both the sellers and buyers, but
included just the poor sellers in India and Iran. The reason for focusing on Iran and India is
because they have had many people from other countries coming to buy a kidney from poor
people and for transplantation surgery. By including India and Iran, I wanted not only to
19explore why poor people purchase with kidneys, but also to study their health policy program
related to kidney transplantation. India‘s and Iran‘s change in laws and policy according to
transplantation of kidneys are an important inclusion in this thesis. The selected literature is
not older than the change of laws in India and Iran, from 1994 and 1988 respectively. In 1994
the Indian government made a law that forbids the trade of using human organs as a
commodity. The government allows people to donate a kidney to a close friend or a relative
without any money involved, but forbids people to sell a kidney for payment to another
person. India had an important trade with kidneys before this new law was created and the
country was known to be one of the greatest exporting countries in the world of kidneys from
poor people to wealthy people from the west. This is the main reason for the change of law
and it is why I have chosen to see how this has affected poor kidney sellers in India.
The government of Iran changed their law in 1988 and allowed people to sell kidneys to the
state and get a compensation reward in return. The trade of kidneys in Iran was also large
before 1988 with rich people coming especially from Saudi Arabia to by a kidney. The war in
Afghanistan has brought many refugees to the country and these poor people could easily
become a target in the kidney trade. The laws in Iran forbid people to sell a kidney to a
person from another country and by this means, the Iranian government managed to stop the
kidney trade. To include all the literature after the change of Iranian laws, I will explore how
this model is built up, how it affected people who are willing to sell a kidney and if the
transplantation policy has managed to prevent kidney trade.
One inclusion element here is to look at their health policy because this also contains many
religious and ethical aspects. When it comes to the ethical consideration, several articles from
different parts of the world that have studied kidney trade and expressed their feelings about
this have been used. Therefore, the different views on how the ethical and religious issues are
connected to kidney trade have been included.
To get an understanding of this trade, I had to look at many different articles that had used the
most similar methods from both India and Iran, such as interviews about people‘s feelings
after surgery. This would enable a better means of comparison. The sampling plan was to
include studies and articles that were created by authors from universities, hospitals or health
departments in both countries or from organizations like WHO and UN.
20The chosen literature in transplantation of kidney includes only kidney selling and not
donation, as elaborated in Chapter 2. Social categories as gender, age and social class to
which kidney sellers belong are taken into consideration and included in the study. Kidney
buyers from Iran have to some extent been included in this study, but this is only to see the
whole connection in the transplantation model. These buyers are a part of this system and
have to be mentioned when describing and understanding this model.
Exclusion criteria are the samples of literature that are not taken into consideration in this
study. One main part in this thesis is to exclude buyers in the kidney trade from India to limit
and narrow down this research. Buyers in India are hard to find because they often leave
shortly after surgery and as there is no register of these patients they are hard to find.
However, I have explained buyers as actors in this trade because they have an important role
in this business, but I have not found studies about where they come from or in what social
context they belong. The buyer is just used to illustrate the whole picture of the risky organ
trade.
Studies and articles that were made before 1988 in Iran and 1994 in India have been excluded
from this study, but some historical perspective has been used to see the development before
and after Iran and India changed their transplantation system. I have excluded studies from
other countries because they have just investigated the buyers from their own countries and
their health conditions after transplantation.
Many articles and studies were not taken into the study after closer scrutiny because they did
not contain what I really wanted to explore. One example is the difference between related
and unrelated kidney donation.1 Articles contain these words and it depended on how these
words were defined in the studies and articles before the meaning of it made sense in relation
to my theme. There were more studies from India describing kidney surgery from the legal
transplantation system.
1
Unrelated kidney donation is described in the literature as the people who sell one kidney to another person for
money. By ―unrelated‖ it means that people are not in relationship with each other and they only sell or buy an
organ. It is possible that people know each other, but they are not connected in blood or giving away a kidney
for an altruistic reason. Related is the opposite; when people are family members or close friends, for instance,
spouses who donate a kidney for love, or because it is a good thing to do. Related donors do not expect a gift or
money in return.
213.5 Literature Collection
In the search for literature I have collected second-hand data from data bases and have used
most studies and medical articles from Medline/Pubmed and through Helsebiblioteket, to be
sure that these data are reliable and valid. I have not found studies that have compared India
and Iran in organ trade before and that is why I have tried to find studies that have the most
similar topics as possible. There are a large number of articles on the Internet that can refer to
the trade of human kidneys and how many people have been humiliated. To collect reliable
information about the kidney trade I started to search the Internet and newspapers from both
western and developing countries to see how wide this topic is and how many people this
involves. These articles were only used as a background and a start on the literature proposal
of this thesis.
Therefore, when I carried out the search in Medline/Pubmed I found studies and articles with
related and linked literature to the one I found first and this gave more relevant data and
widened the search. Although at the start of my search there were not many articles that fitted
into this research, by reading the references used by the various authors, I obtained access to
new data. To find topics about religion and ethics I have used data bases in Bibsys and
Google Scholar. To be sure that I have used all the available data resources that were
available I have received assistance from the librarian at the hospital in Buskerud, Vestre
Viken. Keywords in my search have been: ―Foreign or unrelated kidney transplantation or
donation or selling‖, ―trade or trafficking of human organs‖, ―India and Iran health systems‖,
―ethics‖, ―religion and donation‖, ―risk‖, ―trust‖ and ―poverty‖.
Just searching for ethics or religion resulted in many hits, e.g. 312 000, but when I put ―ethics
kidney selling India‖ the hits were reduced to 151 000. Still, this is a large number, but also
very fascinating in the start of the study because I did not realize how huge this was. To
narrow this down even more, I did the same search in Pubmed and it came up with very few
articles and studies, for example only 3 hits when I used ―ethics in kidney vending‖ or 18 hits
when I switched ―vending‖ with ―selling‖. However, on searching for ―unrelated kidney
donation‖ or ―foreign kidney donation‖ in Pubmed, the results were 138 and 53 hits, and
when I added ―India‖ and ―Iran‖ in this search, it resulted in 7 and 0 hits. I had to be creative
in getting information and spent many hours just finding out what words gave the best result. I
22think the articles and studies found could be representative for this study, but of course, the
lack of time did limit it and at some point the selected literature had to be looked through and
be evaluated. After some evaluation, some of collected data were considered as relevant and
others not. Those who were not evaluated as relevant did not contain unrelated or foreign
donation/selling of organs. Many articles were related to altruistic donation of kidneys to
family members or close friends.
Because there are no books to be found related to issues in organ trade, I have to trust what I
have found on the Internet. Iran has a legal program/model with unrelated kidney donation
and that is why I have managed to find so many studies and articles from this country. The
Indian transplantation system just has data from related and cadaveric kidney transplantation
and does not allow purchase with kidneys. Due to this, I have used some articles that are
more related and concerned with the buyers coming from abroad to by a kidney and these
articles are written by doctors or departments in other countries that have been in contact with
the recipient after surgery. These articles describe the risk these patients take and what kind
of health care they receive and I only use this literature to confirm that India still has an illegal
kidney trade. Another search for data on transplantation policy in India and Iran was to
search directly in their health department programs, but this search was very difficult and I
really did not find what I was looking for. The websites in these countries did not show the
result I wanted and they were also in their native language. Therefore, I had to trust the
literature that was found in Pubmed and related articles.
The literature which is gathered on the theoretical concepts is from social scientists to see how
my findings can be connected to the social theory of poverty, health and social risk. Many
studies and articles from Iran are by authors from different hospitals or universities and they
are published in journals with relation to nephrology or kidney transplantation. Some of these
articles are also published in American journals. In this thesis I have also used articles and
literature from different international organizations like WHO (World Health organization),
The World Bank and UN (United Nation) to see their definition on some concepts and how
they are involved in matters like organ trade and what pressure they assert to prevent
exploitation of poor people in the third world. How dealers and buyers operate on the black
market in India was just searched in Google on the Internet and resulted in 228 000 hits by
using the search words ―How to buy a kidney in India‖. Another search on ―Kidney hospital
23India‖ gave 133 399 hits. Several of these website offer kidney transplantation and the
financial cost of surgery.
To compare India and Iran in this thesis, I have chosen one study from each country to look
for differences and similarities. In both these studies, interviews with sellers that have already
gone through a transplantation surgery have been used. Both studies have used pilot studies
before going out in the field and completing the interviews. In my opinion these studies have
used a quantitative method, because of the use of statistical analysis of the answers. In this
study, which is a qualitative study, I will use the data from these two quantitative researches
to see who the sellers are, what age they are, whether there is gender disparity and what social
class they come from. These quantitative data can be related and discussed into a qualitative
analysis, because the background of these people can be better understood in relation to their
social context. To use this comparative approach will be as Helman (2007: 17) defines it: ―to
distil key features of each society and culture and compare these with other societies and
cultures in order to draw conclusions about the universal nature of human beings and their
social groupings‖.
3.6 Limitations
The qualitative method involves several ethical issues in social and nursing science.
Objectivity in observation and through interviews are important parts of this method and
something the researcher has to be aware of when he or she tries to understand the meaning of
people‘s behavior and actions. The balance between the researcher‘s own opinion and
participant‘s meaning concerns how well the researcher manages to interpret the meanings of
others. In Gadamer‘s hermeneutic understanding of meaning, it concerns: ―the relationship
between an act and those trying to understand it‖ (Fay, 2007: 142). Several articles I have
used in this thesis concern interviews performed with sellers in India and Iran. The
objectivity in these studies has to be considered and seen in relation to the circumstances
under which these interviews have carried out, are the questions easy to answer, does the
seller understand it, is there other elements that disturbed the participation of the interview.
Shortage of time with this thesis does limit my methods and design because there has not been
enough time to collect data through interviews with people, or to collect quantitative data by
myself. Because of this, I have just used and described the data that I have found and
24compared them with each other to understand and explore these two government policies and
how individual experience of selling a kidney is expressed through the collected literature.
However, it can be very difficult to evaluate this as real or false when some articles are from
newspapers or other media which do not have strict control of the truth. In the case of India,
many stories about kidney trading are taken from the Internet and mass media because there is
no other place to find literature. This limits my thesis because I cannot do my own field
research on this topic and have to use some unreliable sources when it comes to the black
market in kidney selling.
The reason for social risk in a society can be complicated and difficult to explain because this
is just a literature study and poor sellers have not been interviewed by me personally. In
addition, many studies from Iran and India describe that there is a lack of data according to
long term risk related to sellers and this therefore becomes even more difficult to define in
this thesis.
There are also dilemmas related to my personal realities as a nurse. That is though I tried to
collect the data and do the analysis without any personal influences. The weakness in this
literature review is if the collected literature is influenced by my personal understanding of
organ vending. However, I must be aware of this and see if I have made it wide and objective
enough to give a broad picture of organ trade in India and Iran. A difficult part in a literature
review is to be critical and not prejudice several actors in the study. This can arise especially
in this thesis when poor people are exploited by dealers in the kidney trade. With a western
view of how a kidney transplantation program has to be fulfilled and my background as a
nurse in a dialysis unit, my objective insight to this problem must be kept if the research shall
be trustworthy.
3.7 Summary
In this chapter is has been elaborated, explained and discussed the use of qualitative method
with a literature review as a method. Inclusion and exclusion criteria have been described in
relation to kidney vending in India and Iran. How the literature has been collected is explain
and the key words used are described. Reliability and validity consideration have been
discussed in selecting the literature. Different aspect of limitations in a literature has been
elaborated and related to this thesis.
25Chapter 4 Iranian and Indian transplantation model
4.1 Introduction
In this chapter I will present my findings on the legal Iranian transplantation model and the
illegal kidney trade in India. These models will be described and analyzed on how they have
developed as a background in relation to my discussion in chapter five.
4.2 Iranian Model
Initially in this section I will present the background of the unrelated kidney transplantation
model in Iran. In my point of view, it is important to explore the historical reason and why
the government of Iran developed this model.
As already mentioned, the background of the Iranian transplantation model started before
1988, when Iran had a history with many patients coming from Arabic countries to buy
kidneys and transplantation surgery. The trade of human organs became commercial and the
government wanted to stop and regulate this business, and created a new transplantation
program (Griffin, 2007). Another explanation is due to the Iran-Iraq war which limited the
financial and technical use of dialysis with many patients requiring renal replacement therapy.
Many patients died before receiving therapy and the government had to do something to give
these people an opportunity to live longer (Einollahi, 2004: 422). Bagheri expresses that the
fear of trade with the commercialism in the black market, at the same time as many patients
died while waiting for new kidneys, was the main reason for developing such a program. He
also stated one religious reason in relation to the society of Islam: ―significant value of saving
life‖ (2006; 270). However, this must only be to save the patient with ESRD‘s life and does
not take into account the risk to which a healthy young person is exposed.
The gap between organ supply and increased number of patients on the waiting list, is
elaborated as a reason from several authors, Rouchi (2009), Einollahi (2007) and Nejatisafa
(2008), Zargooshi (2001: 387) refers to the rejection of the cadaveric donor transplantation
program and the easily available live donor with many poor desperate people, as an excuse to
continue with the vending of kidneys. He is the only author who sees the sale of kidneys to
the government as vending and points this out, but in his article he has determined to refer to
the seller of a kidney as a donor (2001: 386). Hasan is a researcher from Pakistan who
compared the Iranian model and the kidney trade in Pakistan. He also blamed the war with
Iraq as a consequence which isolated Iran from the rest of the world, putting pressure on its
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