2009 Article 9079
2009 Article 9079
(2008) 2:107–111
DOI 10.1007/s11568-009-9079-4
RESEARCH ARTICLE
Received: 27 January 2009 / Revised: 31 March 2009 / Accepted: 21 April 2009 / Published online: 29 May 2009
Springer Science+Business Media B.V. 2009
Abstract Prior to the completion of the Human Genome and acceptability of genetic research and thereby affect the
Project, bioethicists and other academics debated the recruitment process. Within this community it is understood
impact of this new genetic information on medicine, health that genetic and environmental factors contribute to com-
care, group identification, and peoples’ lives. A major issue plex diseases such as diabetes, hypertension, and cancer;
is the potential for unintended and intended adverse con- and acknowledgment of the significance of environmental
sequences to groups and individuals. When conducting stressors in the production of disease. A commitment to
research in, for instance, American Indian and Alaskan service, i.e. ‘‘betterment of humanity,’’ karmic beliefs, and
native (AI/AN) populations, political, cultural, religious and targeting environmental stressors could be prominent ave-
historical issues must be considered. Among African nues for public health campaigns in this population. This
Americans, the Tuskegee Syphilis Experiment is a reminder study suggests that minority status does not automatically
of racism and discrimination in this country. The goal of the indicate unwillingness to participate in genetic or medical
current study is to understand reasons for participating, or research. Indian Americans were not skeptical about the
not, in genetic research such as the HapMap project and potential benefits of biomedical research in comparison to
other genetic/medical research from the perspective of the other ethnic minority communities in the United States.
Indian American community in Houston, Texas. In this
article, we report on a topic central to this discussion among Keywords Karma Reincarnation Genetic research
Indian Americans: karma and reincarnation. Both concepts Medical research
are important beliefs when considering the body and what
should happen to it. Karma and reincarnation are also
important considerations in participation in medical and Introduction
genetic research because, according to karma, what is done
to the body can affect future existences and the health of Prior to the completion of the Human Genome Project (HGP),
future descendants. Such views of genetic and medical bioethicists and other academics debated the impact of this
research are culturally mediated. Spiritual beliefs about the new genetic information on medicine, health care, group
body, tissue, and fluids and what happens to them when identification, and peoples’ lives. Issues of confidentiality and
separated from the body can influence ideas about the utility discrimination were among the major concerns. Privacy of
genetic information is an issue for a number of reasons. For
instance, family members and courts may want access to
J. F. Hutchinson (&)
genetic information. Genetic data may be used to predict
Department of Anthropology, University of Houston-University
Park, Houston, Texas, USA future health-care costs or it may be used by employers to
e-mail: [email protected] predict job performance (Fuller et al. 1999, p. 1359).
A major issue is the potential for unintended and
R. Sharp
intended adverse consequences to groups and individuals.
Department of Bioethics, The Cleveland Clinic, Case Western
Reserve, Cleveland, OH, USA People in all communities are concerned about the conduct
e-mail: [email protected] and benefits of genetic research in their communities.
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108 Genomic Med. (2008) 2:107–111
However, when conducting research in, for instance, Two qualitative techniques, in-depth interviews and focus
American Indian and Alaskan native (AI/AN) populations, groups, were employed in data collection. Use of both
political, cultural, religious and historical issues must be methods increases reliability while validity is assessed
considered. The collection of genetic information in through ‘‘authenticity’’ of participant voices (Neuman
defined gene pools such as tribal groups can be stigma- 2007).
tizing. While AI/AN acknowledge the benefits of medical
research, the conduct of past research impacts current Study sample
involvement because of two issues, theft and respect. Theft
has been a significant experience in the history of Ameri- From 2004 to 2007, Indian Americans over the age of
can Indians. Consequently, tribes are concerned about … 18 years were recruited for this study in Houston, Texas.
‘‘ultimate control over stored biological samples and how The sample consisted of 62 males and 43 females who took
the tribe will be identified and portrayed in subsequent part in 22 focus groups and 5 interviews, both lasting 1–
publications’’ (Bowekaty and Davis 2003, p. 12). 2 h. All participants are of Indian ancestry and most were
Among African Americans, the Tuskegee Syphilis recruited at festivals such as the Navaratri festival, cultural
Experiment is a reminder of racism and discrimination in centers such as the Gujarati Samaj of Houston, religious
this country. This is shown by the fact that the study was facilities such as the Sri Meenakshi Temple and cultural
widely reported for almost 40 years without evoking leaders identified through the ethnographic component of
widespread protest within the medical community and at the study. While most focus groups targeted the general
the United States Public Health Service (Brandt 1978). population, one was specific to medical students at Baylor
African Americans are not only aware of this study but College of Medicine and four were conducted among
experience ‘‘everyday’’ racism within the health care sys- undergraduates at the University of Houston. Age ranged
tem. For example, studies have shown that blacks and from 19 to 70 years with a median of 29 years
women are less likely than whites and males to be referred (mean = 33 years). Participants presented a wide range of
for cardiovascular procedures (Wenneker and Epstein ethnic and caste backgrounds; and all were college-edu-
1989; Ayanian and Epstein 1991) and are less likely to be cated, except one high-school graduate.
on the waiting list for an organ transplant. Louis W. Sul-
livan, Secretary of Health and Human Services stated that Measures
… ‘‘there is clear, demonstrable, undeniable evidence of
discrimination and racism in our health care system’’ Themes and concepts discussed in the focus groups dealt
(Sullivan 1991, p. 2674). This is, of course, an enormous with (1) personal health beliefs, (2) views of genetic and
problem in the recruitment of disenfranchised people for medical research, and (3) authority and leadership in the
medical and genetic research. Indian community. Discussions revolved around: (1)
Social issues associated with the HGP lead congress in understanding of illness, (2) individual response to illness/
1990 to set aside 5% of the HGP budget to fund the Ethical, disease, (3) institutional medicine and society, (4) medical
Legal, and Social Implications of Human Genetics Research information, (5) medical (non-genetic) research, (6)
(ELSI) program. This was an attempt to achieve a balance genetics and society, (7) blood/tissue/organ donation, (8)
between privacy concerns and ‘‘fair use’’ of genetic data ethnicity and genetics, (9) intergenerational differences,
(Jeffords and Daschle 2001, p. 1249). The current study was and (10) collective authority. The focus group guide was
funded by ELSI and is part of a larger project, the Human pretested at a focus group session conducted for that pur-
Haplotype Map Project (HapMap) which is a study to pose and modified based upon the recommendations of
investigate genetic differences related to disease. The goal of those in attendance.
the current study is to understand reasons for participating,
or not, in genetic research such as the HapMap project and Data analysis
other genetic/medical research from the perspective of the
Indian American community in Houston, Texas. In this After transcription, themes were identified across focus
article, we report on a topic central to this discussion among groups and interviews. Transcripts were read by multiple
Indian Americans: karma and reincarnation. members of the research team and through discussion and
analyses of the transcripts, a final set of themes were
identified. The team of researchers was involved in iden-
Methods tifying themes, developing codes for themes, and con-
necting codes with theme segments (sections of the
An exploratory and qualitative approach was used to transcript that correspond to a theme). After the initial
examine Indian American perspectives of genetic research. coding, the documents were reread to modify the coding in
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Genomic Med. (2008) 2:107–111 109
response to emerging codes. In the final version, the 10 humanity’’, ‘‘benefit the human race’’, ‘‘increase the life-
major categories above with subcategories were identified. span of the human race’’, or ‘‘increase the quality of the
This data was analyzed using the QSR NVivo program offspring.’’ When discussing stem cell research, partici-
which stores and references qualitative data in multiple pants often stated ‘‘I think you can use it because if you are
ways. Using this program, codes and sub-codes were using it to benefit human society, then that’s okay.’’
identified for major themes to create a tree of codes for Another respondent said
themes.
It’s like donating your organ after death. Why you
donate your organs? Some people donate their eyes,
their heart for the medical research. Why, because
Research findings
after you are dead, you want to benefit your society in
some way.
Karma/service
Participants noted that ‘‘any research can be used in God’s
In order to understand views on genetic/medical research service’’ and thereby ‘‘benefit humanity.’’
among Indian Americans, it is necessary to examine their
I mean like we have an idea that anything could
perspectives concerning the body and what happens to it
potentially be used in God’s service or in a proper
during life and after death. Central to these views is the
way.
concept of karma. The majority of participants in this
research are Hindu (80%) and Karma is central to Hindu Since donating blood samples and participating in
religious consciousness. In Hindu, Jain, Sikh and Buddhist research is done for ‘‘the betterment of humanity’’ and a
philosophies, karma denotes the cycle of cause and effect. ‘‘service to God’’, it should be carried out to improve the
Like causes produce similar effects. For instance, right quality of life and extend life. By giving to others one
actions produce good results while wrong actions produce secures wealth and health. Karma affects length of life,
bad ones. Consequently, living things are responsible for illness, health, physical appearance, social status, wealth,
their action and the impact it has on their lives (Reichen- poverty, and misfortune (Reichenbach 1988).
bach 1988). Some participants were concerned about giving and
According to one participant: receiving body parts because, according to karma, personal
qualities are also transferred.
Our basic philosophy is trinity. Trinity means we
believe there are three basic things: matter, soul and So you know if we give blood or not it is karma, you
God. God to us is all pervading. It is not something that are giving, passing on your karma, somebody is
is static and sitting on one place. It is matter through taking from you. They are accepting some of your
which this world came out of. And the third thing is karma.
soul. Regarding soul we believe in transmigration: the
Well generally in our scriptures, someone who is
circle of life and death. And that circle is according to
practicing the philosophy very strictly and so on they
our Karma. Our deeds become our destiny.
have a higher consciousness. Therefore they have the
According to karma, ‘‘as a man sows, so must he reap’’ ability to take karma and purify the other persons.
(Wadia 1965).
Blood is donated as part of seva (service) but it is also a
Actions and consequences are not the major concern
way to transfer qualities other than blood to the recipient.
though. It is the moral reason for the action. The law of
Blood donation is not only a way to purify oneself but it is
karma is about moral intentions. Participants often stated
an opportunity to affect others in a way that transcends the
that they would participate in medical research if it ‘‘ben-
purpose of the original donation (karma). By donating blood
efits humanity.’’ This is consistent with the moral aspect of
you get rid of ‘‘senile blood’’ so that new blood can be
karmic causation. In other words, ‘‘acts performed with
generated. The problem, of course is that the receiver is the
right intentions lead to dispositions to perform like acts;
recipient of polluted or senile blood. Individual acceptance
acts performed with the wrong intent produce corre-
of the donation (daan) including the donor’s sin or impu-
sponding dispositions.’’ If a person does a good act for the
rities is a prominent theme in South Asia (Copeman 2004).
wrong reasons it is still an immoral act (Reichenbach
1988). As such, participation in research to help humanity
is a morally good action that can lead to good fortune now Reincarnation
and in future lives.
Individuals were willing to donate blood samples for Karma is attached to the idea of reincarnation. There is an
genetic research if it could lead to the ‘‘betterment of ongoing cycle of birth and death, conditioned by karma,
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110 Genomic Med. (2008) 2:107–111
linking an individual to past and future existences (Kolenda tissue and all sorts of and so there is a lot of optimism
1964; Wadia 1965). In reincarnation, the spirit or soul among researchers about doing research of this type
survives death and is reborn into a new body, human or because they think this might allow us to cure certain
nonhuman. Individuals can be reborn as animals, human types of diseases for which there is no cure today.
beings or insects depending upon the depletion of evil
Through knowledge, one may be able to live a healthier life
karmas and maturing of good karmas. As stated by Bud-
and change their karma. So karma is not simply fate, it can
dha, bad conduct (duccaritam) leads to hell or rebirth as an
be altered by environmental factors.
animal or ghost while good conduct (kalyanam) leads to
birth in heaven or as a human being (Krishan 1983). In the
Nature/nurture/fatalism
rebirth, a new personality develops but the essential parts
are constant throughout these consecutive lives (Nikam
The relationship between karma and health is not fatalistic
1951; Wadia 1965).
but complicated by environmental influences such as tox-
…reincarnation, it means that your soul takes on ins, exercise, stress, and diet. The participants acknowl-
another body. edged the importance of both genes and environmental
factors in the production of disease. Individuals often stated
Participants discussed the relationship between reincar-
that ‘‘genes contribute to health.’’ ‘‘Your parents might
nation and involvement in medical research.
have a disease that’s transferred to you. It’s genetic.’’ But it
I asked my mother, I want to give my eyes to this. was also acknowledged that health is due to ‘‘a combina-
And my mother, but she said when you reincarnate tion of genes and the environment’’ and that the relation-
after rebirth you will not have eyes if you donate ship is complex.
eyesight.
I think it is a combination because there are certain
And if it’s a tissue which, while I’m living, if I end up genes that do not express themselves unless they have
donating a tissue that’s fine. But I don’t want to do the appropriate environment for the expression of
anything after I am dead. So I’m possessive of my gene. So that’s the example of diabetes, Type 2 dia-
dead body in a way. I don’t want it to be messed up. betes which you get because you were transplanted
here and live the lifestyle here.
The reincarnation of our sense, of our body parts, that
really goes to blood, if you donate eyes, our eyes. Stress and diet were repeatedly noted as complicating the
That’s a kind of reincarnation. influence of genes on health. For example,
Related to reincarnation, some participants were concerned diet, pollution, comforts, stresses, everything is so
about their physical body after death and did not want body much different from India. I still feel that is one of the
parts removed. major [reasons for disease among Indian Americans].
According to karma, individuals are responsible for their
Many participants are vegetarian and considered it a
fate. Through knowledge and the removal of dispositions
health-promoting behavior.
that shelter ignorance and desire, fate can be altered
(Reichenbach 1988). It was repeatedly stated that I’m a vegetarian, strict vegetarian. My diet is such that,
‘‘knowledge is power.’’ ‘‘Because it may not give you the you know, I don’t have any problems with weight or
solution, but it gives you the knowledge as to what has anything like that. I usually don’t fall sick very often.
occurred.’’ Knowledge was discussed as prevention to
While risk for disease may be a consequence of karma,
disease.
this relationship can be changed by manipulation of envi-
I think it is important to know, like for example ronmental factors such as diet and exercise. With knowl-
diabetes or high blood pressure. You need to know edge, individuals can change their behavior (diet and
what can be done to prevent it or delay it and I think exercise) to reduce the risk of disease and in so doing
that’s important. That’s important that we learn increase their good karma which will be transferred to
what’s involved with a disease. future existences.
It is important for individuals to be knowledgeable so they
have the tools to prevent disease and research is needed to
Conclusions
generate knowledge.
… use them [stem cells] to create different types of Karma and reincarnation are important beliefs when con-
cells which may be used to create lung tissue, skin sidering the body and what should happen to it. Both
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Genomic Med. (2008) 2:107–111 111
concepts are also important considerations in participation Also, with qualitative methods such as focus groups, the
in medical and genetic research because, according to prevalence of opinions is not known. Lastly, collection of
karma, what is done to the body can affect future exis- blood samples for the HapMap Project took place during
tences and the health of future descendants. Living a the recruitment for focus groups in the same population.
healthy lifestyle, i.e. vegetarianism and exercise, not only However, blood collection was quickly completed (indi-
affects an individual today, but their existence in future cating willingness to take part in research) and probably
lives as well as the lives of their children and their did not hamper participation in the qualitative aspect of the
descendants. Such views of genetic and medical research study.
are culturally mediated. Spiritual beliefs about the body,
tissue, and fluids and what happens to them when separated Acknowledgments We would like to thank the Indian community
in Houston for their participation in this project. In particular, we
from the body can influence ideas about the utility and want to thank the leaders at the Gujarati Samaj Cultural Center in
acceptability of genetic research and thereby affect the Houston and Sri Meenakshi Temple. We also want to acknowledge
recruitment process. that the data presented here comes in part from interviews and small
Within this community it is understood that genetic and group discussions conducted by Deepa S. Reddy, University of
Houston-Clear Lake. This research was conducted with the assistance
environmental factors contribute to complex diseases such of Jonathan Verma, Corrie Manigold, Aswini K. Betha, and Deanna
as diabetes, hypertension, and cancer; and acknowledg- Guidry. This study was supported by a grant from NIH (HG003083).
ment of the significance of environmental stressors in the
production of disease. As such, there was a commitment to
being knowledgeable to prevent disease or reduce its References
consequences and to ensure that karma is impacted in a
positive way. A commitment to service, i.e. ‘‘betterment of Ayanian JZ, Epstein AM (1991) Differences in the use of procedures
between women and men hospitalized for coronary heart disease.
humanity,’’ karmic beliefs, and targeting environmental N Engl J Med 325:221–225
stressors could be prominent avenues for public health Bowekaty MB, Davis DS (2003) Cultural issues in genetic research
campaigns in this population. with American Indian and Alaskan Native people. IRB Ethics
Lastly, this study suggests that minority status does not Hum Res 25(4):12–15. doi:10.2307/3563819
Brandt AM (1978) Racism and research: the case of the Tuskegee
automatically indicate unwillingness to participate in syphilis study. Hastings Cent Rep 8:21–29. doi:10.2307/3561468
genetic or medical research. Similar to Mwaria’s (2006) Copeman J (2004) Blood will have blood: a study in Indian political ritual.
study of cancer research among African Americans and Soc Anal 48(3):126–148. doi:10.3167/015597704782352320
Hispanic Americans in New York, Indian Americans in Fuller BP, Khan MJE, Barr PA, Biesecker L et al (1999) Privacy in genetic
research. Science 285(5432):1359–1361. doi:10.1126/science.285.
this sample were willing to participate in research. All 5432.1359
minorities are not the same in terms of historical, socio- Jeffords JM, Daschle T (2001) Political issues in the genome era.
cultural, economic, and political circumstances and relation Science 291(5507):1249–1251. doi:10.1126/science.1058370
to the majority population. Ethnic minorities have different Kolenda PM (1964) Religious anxiety and Hindu fate. J Asian Stud
23:71–81. doi:10.2307/2050622
histories in the United States and are situated differently. Krishan Y (1983) Karma vipaka. Numen 20(2):199–214
Consequently, ethnic groups vary in terms of their per- Mwaria C (2006) From conspiracy theories to clinical trials:
spectives on and interactions with the medical system. In questioning the role of race and culture versus racism and
this study, Indian Americans were not skeptical about the poverty in medical decision making. In: Schulz AJ, Mullings L
(eds) Gender, race, class, & health. Jossey-Bass, San Francisco
potential benefits of biomedical research in comparison to Neuman WL (2007) Basics of social research: qualitative and
other ethnic minority communities in the United States. quantitative approaches. Pearson, Boston
Socio-cultural frames through which individuals view the Nikam NA (1951) The immortality of the soul. Mind 60(238):257–
potential benefits and threats of biomedical research need 258. doi:10.1093/mind/LX.238.257
Reichenbach BR (1988) The law of karma and the principle of
to be subjected to careful analysis. Without this type of causation. Philos East West 38(4):399–410. doi:10.2307/1399
analysis, members of some communities may decide not to 118
participate in research or choose not to avail themselves of Sullivan LW (1991) Effects of discrimination and racism on access to
the fruits of biomedical research, thereby exacerbating health care. JAMA 266(19):2674. doi:10.1001/jama.266.19.2674
Wadia AR (1965) Philosophical implications of the doctrine of
existing health disparities. karma. Philos East West 15(2):145–152. doi:10.2307/1397335
Wenneker MB, Epstein AM (1989) Racial inequalities in the use of
procedures for patients with ischemic heart disease in Massa-
Limitations chusetts. JAMA 261:253–257. doi:10.1001/jama.261.2.253
123