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J Genet Counsel (2008) 17:373–383
DOI 10.1007/s10897-008-9156-1
ORIGINAL RESEARCH
“What is this Genetics, Anyway?” Understandings
of Genetics, Illness Causality and Inheritance Among British
Pakistani Users of Genetic Services
Alison Shaw & Jane A. Hurst
Received: 10 October 2007 / Accepted: 5 March 2008 / Published online: 8 July 2008
# National Society of Genetic Counselors, Inc. 2008
Abstract Misconceptions about basic genetic concepts and
inheritance patterns may be widespread in the general
population. This paper investigates understandings of
genetics, illness causality and inheritance among British
Pakistanis referred to a UK genetics clinic. During
participant observation of genetics clinic consultations and
semi-structured interviews in Urdu or English in respondents’ homes, we identified an array of environmental,
behavioral and spiritual understandings of the causes of
medical and intellectual problems. Misconceptions about
the location of genetic information in the body and of
genetic mechanisms of inheritance were common, reflected
the range of everyday theories observed for White British
patients and included the belief that a child receives more
genetic material from the father than the mother. Despite
some participants’ conversational use of genetic terminology, some patients had assimilated genetic information in
ways that conflict with genetic theory with potentially
serious clinical consequences. Additionally, skepticism of
genetic theories of illness reflected a rejection of a
dominant discourse of genetic risk that stigmatizes cousin
marriages. Patients referred to genetics clinics may not
easily surrender their lay or personal theories about the
J. A. Hurst
Department of Clinical Genetics and Regional Genetics Service,
Churchill Hospital,
Oxford, England
A. Shaw (*)
Ethox Centre, Department of Public Health and Primary Care,
University of Oxford,
Badenoch Building, Old Road Campus, Headington,
Oxford OX3 7LG, England
e-mail: [email protected]
causes of their own or their child’s condition and their
understandings of genetic risk. Genetic counselors may
need to identify, work with and at times challenge patients’
understandings of illness causality and inheritance.
Keywords Genetics . Genetic risk . Culture . Inheritance .
Consanguinity . Genetic testing . British Pakistanis
Introduction
Genetic counseling aims to provide information to help
individuals referred for a known or suspected genetic
condition (in the individual, a pregnancy, child or relative)
make informed reproductive decisions, by establishing a
diagnosis, recurrence risks and risk-management options.
To be effective, the information provided needs to be
assimilated within patients’ prior understandings of illness
causality, inheritance and genetic risk (Richards and Ponder
1996; Richards 1998; Chapple et al. 1995). These understandings may be profoundly influenced by education,
culture and ethnic background. Individuals with graduate or
postgraduate level education may readily accept a genetic
explanation for their child’s problem and benefit most from
genetic counseling (Weil 1991; Kelly et al. 2004). Within
the American general public educated up to secondary/high
school, basic misconceptions about genetics such as the
location of genes in the body may be widespread, despite
conversational familiarity with genetic terms (Lanie et al.
2004). Among 15–16 year old British school students
taking compulsory science education there is confusion
over the nature of genetic information and mechanisms of
Mendelian inheritance (Wood-Robinson et al. 2000; Lewis
et al. 2000). Beliefs in the environmental or spiritual causes
of illness may offer more satisfactory explanations for a
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child’s problem than genetic theory and may be patterned in
culturally-specific ways, with implications for genetic
counselling across cross-cultural contexts (Panter-Brick
1991; Meiser et al. 2001).
Patients’ prior theories of illness causality and inheritance may influence their assimilation of genetic information and understandings of risk in clinically significant
ways (Weil 1991; Shiloh and Berkenstadt 1992). Alternative theories of causality (Santos and Bizzo 2005) or
‘personal’ theories of inheritance (Mc Allister 2003), such
as ‘it only affects men’, ‘it is on the mother’s side’ or ‘it
skips generations’ are often based upon observed patterns
in the family history of inherited characteristics or medical
problems (Hunt et al. 2002). ‘Lay’ or ‘everyday’ explanatory models can be at odds with genetic theory such that
genetic risk is overlooked or misunderstood (Richards
1996, 1998; Davison 1996). Cross-cultural differences in
understandings of inheritance may also affect risk perception and the assimilation of genetic information (Richards
1996; Meiser et al. 2001). Patrilineal kinship, such as is
found in South and South East Asia, may provide a
blueprint for conceptualising biological inheritance as
occurring through males that is ‘largely incompatible’ with
Mendelian inheritance, which recognises an equal genetic
contribution from both parents (Meiser et al. 2001;
Richards 1996). The belief that a causative gene is inherited
from the father alone could mean that risk for recessive
conditions in the wider family is underestimated and carrier
testing therefore considered irrelevant, but there is a dearth
of data on the potential significance of this for genetic
counseling (Meiser et al. 2001). Consanguineous marriage,
common in the Middle East, South Asia, North Africa and
parts of Southern Europe, also presents challenges to the
assimilation of genetic information (Raz et al. 2003). The
practice is associated with an elevated risk of a wide range
of mostly rare recessive conditions (Bittles 2001) but has
important social and cultural correlates (Shaw 2001; Shaw
and Charsley 2006). In this context, a genetic diagnosis, as
something ‘in the family’, is potentially stigmatizing not just
of the individual but of the entire family. Individuals or
couples may be reluctant to accept or discuss a diagnosis that
may adversely affect their own or other family members’
marriages or marriage prospects and may negatively affect
women’s marriage prospects in particular (Raz et al. 2003).
Patterns of authority and gendered hierarchy may also
significantly affect communication about genetic risk within
the family (Raz et al. 2003; Shaw 2003)
Educational and cultural factors influencing access to
and assimilation of genetic information may converge for
members of minority ethnic groups in Western Europe,
America and Australia. Inequalities in accessing service
may reflect miscommunication arising from patients’
unfamiliarity with genetic and medical jargon, combined
Shaw and Hurst
with problems with translation, where they are dependent
on family members or interpreters for access to clinical
information (Browner et al. 2003). Consanguineous marriage and the issues it raises is now increasingly relevant to
genetic counseling referrals in Western Europe, North
American and Australia, given widespread migration from
South and South East Asia and Africa (Port et al. 2005).
There is, however, a tendency for medical practitioners to
stereotype religious and cultural differences in the acceptability of prenatal testing in ways that adversely affect
minority access to prenatal services, for instance in the
belief that Latinos in America or Muslims in Britain will
not accept prenatal diagnosis for religious reasons (Modell
et al. 2000; Hunt and Voogd 2005). Yet individual beliefs
and knowledge may play a larger role than ‘ethnicity’ in the
uptake of amniocentesis (Saucier et al. 2005) and religion
cannot be taken as proxy for Pakistani women’s attitudes to
termination of pregnancy (Ahmed et al. 2006).
In this paper, we focus on British Pakistani patients’
understandings of genetics, illness causality and inheritance
and the implications of these understandings for the
assimilation of genetic risk information. Epidemiological
research indicates that British Pakistanis have an elevated
risk of recessive conditions associated with the practice of
consanguineous marriage. In the general UK population,
the risk of having a child with a serious genetic condition is
about 3%, but this increases to about 6% with first-cousin
marriage and to higher than this where there is a family
history of complex consanguinity (Bundey and Alam
1993). Theoretically, a proportion of this elevated risk
could be managed by genetic testing. The purpose of this
paper is to describe some basic background beliefs
regarding illness causality and inheritance among British
Pakistani users of general genetic services.
Methods
Setting, Recruitment and Sample
This paper draws from a fieldwork-based study of the impact
of genetic risk information on families of Pakistani origin
referred to a UK genetics clinic. We obtained ethical approval
for this study from the National Health Service local research
ethics committee. Given the dearth of information on this
topic, we used qualitative, flexible, patient-centered and openended methods that enabled a focus on clients’ perceptions,
experiences and views. The genetics clinic is situated in a
hospital in a district which, by comparison of data from UK
2001 Census enumeration districts, serves the second largest
Pakistani population in the Southern England outside London.
Muslims number 10,527 or 6.5% of the district’s population
and Pakistani Muslims number 9,703 (6%). The Pakistani
“What is this Genetics, Anyway?”
population of the town in which the hospital is located shares
the broad demographic and socio-economic features of the
British Pakistani population generally (see Shaw 2001;
Harriss and Shaw 2006).
The second author identified potential research participants from among all the Pakistani referrals to the genetics
clinic, inferring their ethnicity from their names. The
second author excluded two families because she thought
a research invitation would be insensitive and a third
because they proved to be Iranian. Potential participants
were invited to join the study in a letter of invitation from
the second author sent out with clinical appointment letters
or given to patients at their clinical consultations. Potential
participants were informed that the researcher (the first
author) is a social anthropologist, not a health care
professional, who speaks Urdu and English and were
reassured about confidentiality. Interested participants received further information about the project and a consent
form in Urdu and English. All but two of those invited to
participate consented to be part of the study. Over the study
period (2001–2005), 61 families were recruited to the
project via the genetics clinic. Most referrals concerned a
problem in a couple’s pregnancy, an infant or child. Five
additional families with an adult or older child with medical
or intellectual problems and who, it emerged, had previously
received genetics advice were recruited by the first author
through local community contacts.
The majority of research participants reported family
origins in villages, town or cities in Mirpur district in Azad
Kashmir (16/36); northern Punjab (12/36); central Punjab
(6/36); Sindh (1/36) and the North West Frontier (1/36).
Most (61/66) couples were consanguineously related—46
as first cousins, 15 more distantly—and five were unrelated. In a majority of marriages, one partner was UK-raised
or ‘second generation’ and married to a spouse raised in
Pakistan. The ‘second generation’ adults had, in most cases,
received some or all of their education in the UK to General
Certificate of Secondary Education (GCSE) level or
equivalent, three were graduates of UK colleges or
universities and one was a graduate from an American
college. Usually the Pakistan-raised spouses chose to talk
with the first author in Urdu and in two couples both
partners were educated in Pakistan and spoke little English.
The conditions observed in the study population reflect
the background risk of genetic conditions shared with the
general population plus the elevated risk of recessive
conditions associated with consanguinity. Cases of thalassaemia were underrepresented, as these are seen by the
thalassaemia service. Overall, 69 different conditions were
observed in 66 families (three families were affected by
more than one condition). The majority of the conditions
were recessives (44/69) of widely varying types (dysmorphic syndromes, lethal dysmorphic syndromes and meta-
375
bolic, neurological, hematological, skeletal, dermatological
and renal conditions). Nine conditions were autosomal
dominant, four were chromosomal, nine were of unknown
cause and three were non-genetic.
Fieldwork Methodology
The fieldwork employed several techniques of qualitative
research: interviews, observations of clinical consultations
and participant observation. Pre-clinic interviews with
participants were supplemented by observations of their
clinical consultations, which identified potential disjunctures between clients’ and clinicians’ understandings.
Emergent themes and issues, which could not have been
anticipated at the outset, were then explored further in
subsequent interviews.
Participant observation enabled the first author to build
longer-term relationships with some of the families being
seen in the genetics clinics and thus to develop a more
complete picture of their understanding of the diagnosis and
its implications than would have been possible from an
interview alone. The first author sometimes accompanied
people to other appointments for their child and helped
them access and understand clinical information, including
through linguistic translation. Social science recognizes that
the presence of a researcher inevitably influences the
processes they are observing; in this case, the first author’s
participant observation was sometimes a necessary prerequisite to the research goal of understanding participants’
responses to genetic risk information and its implications. It
also yielded valuable insights into the difficulties people
can experience in accessing and understanding genetic
information (Shaw and Ahmed 2004). The first author’s
role in facilitating access to clinical information was
recognized by the hospital through an honorary clinical
contract; if research participants sought clarification of
clinical information, the first author would first check such
information with the second author.
Data Collection and Analysis
Interviews usually lasted about 2 hours and were conducted
in participants’ homes before or, more often, after the first
clinical appointment. Initial interviews elicited adults’
understandings of their own or their child or relative’s
problem, its nature and causality and relevant family
history and were supplemented by participant observation
at the clinic and followed by a second or third interview to
discuss emerging themes. Most interviews were recorded in
note form and written up in full as soon as possible
afterwards. A smaller proportion were fully tape-recorded
and then transcribed. Data from participant observation were
recorded in a fieldwork diary. Data were collected on a wide
376
range of issues relating to the understanding of genetic risk in
the context of family experience of particular conditions and
analysis was concurrent with data collection. Regular
reading and re-reading of initial interviews and field
observations identified themes for exploration in subsequent
observation and interviews. Data were analysed thematically. Analysis for this paper involved identifying themes related
to the topics of genetic risk, illness causality and inheritance.
As themes emerged, data were re-analysed to develop and
refine the findings. Several over-arching themes were
identified through this process, providing a framework
through which we present and contextualize the findings.
We refer to our research participants using pseudonyms.
Results
Consanguineous Marriage and Genetic Risk: ‘Genetics
is What Happens When You Marry a Cousin’
Almost all respondents seemed to feel that mainstream
medical and public opinion disapproved of cousin marriages as ‘causing’ medical or intellectual disabilities
among Pakistanis. The uncle of a child with a problem
linked with a de novo mutation with a dominant effect
reported that, prior to their genetics referral, a non-genetics
health professional had informed the family that their
child’s problem was caused by their cousin marriage. Some
respondents had postponed seeking a genetics referral
because they believed cousin marriage had caused the
problem and feared being blamed for it. Mrs Z, married to a
first cousin, delayed attending the genetics clinic until after
her first child was born for these reasons, despite relevant
family history:
We thought it was because we are married in the
family that my niece is like that. When I came to the
clinic where I met you, I felt ‘these people are going to
think badly of me because I am married to my cousin’.
Even when my niece said, ‘go for it. Go for the carrier
test’, I felt they would think badly of me. They
shouldn’t, though, because a lot of the time the girls
have no choice about who they marry, and about 90%
of people who marry cousins do not have children
with handicaps. But it is true, even the young girls in
our community, they go round thinking we have
abnormalities because we marry in the family. It
makes you think twice about going to the genetics
clinic, because you think you are going to be blamed.
When asked what he understood as ‘genetics’, Mr B,
father of a boy with learning difficulties, said ‘genetics is
what happens when you marry a cousin’. Asked why he
thought this, he said he was told by a South Asian support
Shaw and Hurst
worker conducting a home visit that cousin marriage had
caused his son’s problems. He did not want to contradict her
because his wife, who speaks no English, needed her help,
but as the theory made no sense to him, he postponed
requesting a genetics referral until his son was about to leave
school. Mrs C, when asked what she understood as ‘genetics’
replied:
Genetics? It’s about the genes. But I am only married
to a cousin one way. My father and his mother are
brother and sister, but my mother is from outside so
it’s not very much genetics in my family. If my mother
and his father were sister and brother it would be more
genetics.
Time after time, respondents expressed skepticism that
cousin marriage causes birth defects. The following
comment from a young father was typical:
I don’t agree with this cousin marriages and birth
defects argument. There are many many people in our
community who marry cousins, and in Pakistan, but
you don’t see them all having children with medical
problems. And English people don’t marry cousins,
and they sometimes have children with medical
problems.
While most parents were consanguineously married, they
were often skeptical of its relevance for the particular problem
in their case. Following a genetics consultation at which Mrs
K learnt she is a carrier of two recessive conditions, she said:
We were told that it was a genetic problem, but there
was nothing in my family before….
Q: Do you know why they said it is genetic?
Our Dads are brothers. Our Mums are sisters. You know
how it’s like in Pakistan…. The closer you are, the more
likely you marry in the family. If they did not know we
were cousins, or if we weren’t cousins, they would not
say it is genetic.
Respondents were generally happy to give the genealogical details of their own and other consanguineous
marriages in the family when reporting their family history
during a genetics consultation. During clinical consultations, questions about parental consanguinity were asked in
a non-judgmental way. On one occasion, after the second
author carefully explained the reasons for these questions,
one father responded reassuringly, ‘don’t worry, we keep an
open mind’. Nonetheless, respondents sometimes commented afterwards that they thought they would not have
been asked about consanguinity if they were English.
During a home-based interview, Mr G, who is a carrier of
a balanced translocation and whose brother has a chromosomal condition, volunteered emphatically that the condi-
“What is this Genetics, Anyway?”
tion in his family ‘is nothing to do with cousin marriages
but most nurses and social workers think it is.’
Understandings of Illness Causality
Environmental Causes
Parents drew from a range of everyday or commonsense
explanations for a problem in their pregnancy, an infant or
a child. These included: accidents or infections, usually
during the child’s infancy; medical errors and medical
negligence prenatally or at birth, and the behavior of the
mother or, less often, the father, usually during pregnancy.
One case of deafness was attributed to a childhood accident
in Pakistan. A skeletal problem in a child was attributed to
a fever in infancy, during a visit to Pakistan, for which the
infant received injections. The father of children with a
recessive condition thought a snake bite he had received in
Pakistan might have introduced the mutation he carried
into his bloodstream, and asked if a blood transfusion
might remove the gene from his body. Two cases of
developmental delay were attributed to infant immunizations performed in the UK. A grandmother attributed her
grandson’s dysmorphic syndrome to a botched circumcision operation performed locally at which the infant had
lost a lot of blood.
A few women suspected or blamed negligent prenatal
services for not detecting their babies’ problems early
enough. Mrs E, whose first baby died a few hours after its
birth, complained that ‘they were not looking properly on
the [prenatal] scan and they did not see anything’. Mrs C,
whose child has a recessive condition with limb defects,
suspected that her doctors told her they had not noticed the
limb abnormalities prenatally so as to divert her concern
from the fact that she had taken medication in pregnancy
that, she felt, might have caused the problems:
How did they not know? They can tell a baby’s sex, so
why didn’t they see this?...
They said it’s genetic, don’t even think it is the medicine
you took. Why did they say that? That’s the question.
Mrs L, who has two children with a recessive condition,
speculated that there were more birth problems among
babies born to Pakistani mothers because these women
were less likely than White women to be offered prenatal
tests and thus the option of ending affected pregnancies.
Mrs K though early prenatal detection of her child’s
problems might have enabled a therapeutic treatment:
Do you remember, the doctor in genetics, she said they
did not have his notes. Why? I want to know why...
they should have had them. Is it true that it was
apparent on the scan and they should have noticed it?
377
This may be clutching at straws, but I think they could
have found out and done something.
Mrs E thought an early Caesarian might have saved her
second baby who was stillborn ‘If they had got her out,
before she died, could she have been okay?’
Mothers also worried that other things they had done or
that had happened to them in pregnancy may have caused
their child’s problem. These included traveling in Pakistan,
drinking insufficient water when traveling in Pakistan (in
the case of renal problems) and physical abuse from a
husband (in an infant with café-au-lait marks). Several
women reported that relatives or neighbors blamed problems in a pregnancy or child on the mother’s actions during
pregnancy. These included walking out one evening to visit
a brother without a mother-in-law’s approval, and probably
on the way annoying a malicious spirit (jinn), who might
then have harmed the fetus (see Shaw 2000: 209–212).
Eating a particular type of fish was mentioned in two cases of
café-au-lait marks (diagnosed as neurofibromatosis type 1).
Falling asleep with arms and legs curled up during an eclipse
of the moon or sun (in Panjabi: chānd garīn or sooraj garīn)
was mentioned as a possible cause of serious limb
abnormalities (Roberts syndrome) and also in the case of a
cleft lip, where the mother was thought to have had a knife
in her hand while she slept—the eclipse imprinting the knife
image mark on the child’s lip. Mrs W thought her son’s caféau-lait marks (in his case associated with Neurobfibromatosis, type 1) might have be caused by an eclipse,
experienced by her husband who was outside fixing
telephone wires; his wife was pregnant at the time.
Almost all families reported no known relevant family
history in their large extended kindreds spanning the UK
and Pakistan; in almost all cases, they considered the
condition had appeared in their family in the UK for the
first time. Mr B, grandfather of a boy with a metabolic
syndrome said, ‘This is not in our family in the village [in
Pakistan]’. Some parents and other relatives thought the UK
climate and diet might have caused the child’s problem. Mr
B commented ‘there is more risk here than in Pakistan’. In
four cases, two involving learning difficulties and two also
involving obesity, the parents thought the Pakistan climate
might cure the child’s problem, specifically though sweating, which might make the causative gene exit the body.
Three parents asked whether the gene they carried might
eventually leave their body, as a result of exercise, dietary
change, ending a drug addiction or blood treatments
(including transfusion). One mother enquired, after being
given information about recessive inheritance, whether she
might have acquired the mutation associated with her
second child’s problems sometime after the birth of her
first, unaffected child. Significantly, several respondents,
speaking in Urdu, used the words ‘gene’ and jerasīm
378
interchangeably; the Urdu/Punjabi word jerasīm usually
refers to a ‘germ’ and implies an infectious agent; it may
also be used to refer to semen.
Religious Explanations
Regardless of whether or not they acknowledged a problem
as having a cause in a changed gene, chromosome, or some
other factor, almost all parents saw the condition as an
expression of God’s will. Mrs Y, who understood how the
mechanism of recessive inheritance had caused her child’s
condition, said she did not understand ‘why’ the condition
had occurred, adding ‘only God knows why this has
happened’. For many parents, since the condition or
problem represented the will of God it was something they
should endure. Several parents perceived their child’s
problem as a test from God of the parents’ ability to cope
with adversity. Accepting a genetic explanation was
compatible with this view. As Mr D, the father of a
teenager with undiagnosed learning difficulties, put it:
It might give my mind a bit of rest to know. It might
be easier to live with, rather than wondering about the
injection. But a genetic explanation would not change
anything. I have not seen any artificial limb that will
be better than a limb God has made. Maybe it is the
will of Allah that his brain is like that. No one can
change it except God. You can try to find out why, but
God knows best. Maybe God has done this to make
me more responsible.
Mrs U understood and accepted a genetic explanation for
her teenage son’s metabolic condition and also considered
her son as entrusted to her from God:
Science says it is from genetics. We went to the
genetic clinic. They made a family tree, and they
showed how it could have come down in the family
because my husband’s grandfather (father’s father) and
my mother’s grandfather (father’s father) were first
cousins. I don’t doubt that. I think this is true. But God
has a purpose for everything....
Shaw and Hurst
predicament, and seemed to help counter feelings of
responsibility or blame.
Acceptance of the problem as expressing ‘God’s will’ or
a test from God was compatible with seeking treatments or
cures (ilāj), by medical, spiritual, or other traditional means.
As Mr Y put it, ‘Allah says there is a cure for every disease,
whether the doctor finds it or whether the spiritualist guide
finds it. So you must try all routes’. Those offered mutation
research were happy to consent to enrolling their and their
child’s blood samples, hoping that ‘finding the gene’ would
lead to treatments or cures for their affected child.
Additionally, most respondents considered prayer an important means to a possible cure, if God willed it. Some
parents explained that certain verses of the Qur’an are
believed to have healing powers and the location of
relevant verses is known to religious specialists in the UK
and in Pakistan; parents may then take their child to see a
religious specialist, or request them to send the relevant
verses to be worn as an amulet (tāvīs). One father planned
to take his deaf children to a particular pīr (saint) in
Pakistan, if he could afford the trip. In three different cases,
boys with syndromes involving learning difficulties and
obesity had been taken to Pakistan to visit living pīrs or to
visit tombs of deceased pīrs believed to exercise curative
power. One woman had a tongue made out of silver that she
donated to one of these shrines in gratitude after her son,
who has speech problems, began to talk, in fulfillment of
the vow she had made when she took her son to the shrine.
Several participants also mentioned following dietary
advice from hakīms (practitioners of traditional Islamic
medicine) as sources of treatment. Just one mother, a
college graduate educated in the USA whose son’s
metabolic condition is managed through medical dietary
therapy, thought that while prayer is always important, the
use of alternative remedies was not relevant for managing
her son’s problems, but she acknowledged that had she
been living in Pakistan, she might well have consulted a
hakīm or used herbal remedies.
Locating Genetic Substance
My God says that people like [my son] are higher than
angels. Each child that is handicapped is a special gift
from God for a special person, a person that God has
chosen. God chooses special people for these special
gifts. God is very kind. You understand amānat
(safekeeping). A child or person like [my son] is
‘Khudā kī amānat’; God has given him to you for a
special time. [Interview in Urdu].
Most respondents considered blood to be where genetic
problems are located; thus, as we have seen, alternative
remedies often focused on removal of the infective agent or
gene via treatment or alteration of the blood. However, in
one case, a gene was thought to be located on the spine.
Not long after hearing that a research group had located the
causative gene on chromosome 9, the brother of a man with
a recessive metabolic condition said:
Such beliefs were more clearly articulated among parents
of older children with long-term problems, who had
presumably had longer to reflect on the meaning of their
I took him to a hakīm, and he found this gene in his
spine. He uses a drill to numb the spine, and put the
medication in. After an hour the medication brings
“What is this Genetics, Anyway?”
something out of the spine. But the hakīm said there is
a risk it goes wrong, and I am not going to do it.
Q: How do you know the gene is on the spine?
Dr. N said it’s on the ninth or tenth line. There are
three genes and the middle one is missing from the
twelfth line.
Understandings of Biological Reproduction
Although sexual intercourse was recognized as the mechanism by which a child is produced, people usually spoke
of children as being given by God or the result of God’s
will rather than of human action. At a home visit prior to
their first clinic appointment, one mother asked the first
author, ‘What is this genetics, anyway?’ The first author’s
answer involved an account of the fusion of gametes at
conception that elicited embarrassed laughter, and a
comment that ‘in our religion, it is not like this’. Parents’
understandings of biological reproduction usually specified
blood as the substance of inter-generational transmission.
As one mother, speaking in Urdu, put it, ‘a baby is made
from the blood of the father and this mixes with blood from
the mother’. Some respondents with previous genetics
clinic experience described biological reproduction as
involving the mixing of chromosomes or genes. Mrs G,
whose husband’s brother has a chromosome condition said,
‘the chromosomes from the mother and father mix together
and the baby starts’. Those with experience of single gene
disorders usually described conception as involving the
‘mixing’ of genes. Fetal abnormalities or pregnancy loss
were often described as the result of blood ‘not mixing’, or
resulting from ‘when the genes did not match’. Younger
adults, educated to GCSE level or above or its equivalent in
Pakistan sometimes mentioned the terms sperm and egg;
older or Pakistan-raised participants rarely used either
technical English or Urdu or colloquial Panjabi terms for
the male and female gametes.
Paternal Contributions: ‘You Get More from the Father’s
Side’
Sperm, occasionally described by the word jerasīm, was
generally understood as concentrated blood and was thus
seen to represent a ‘strong’ genetic contribution to a child.
When asked during a clinical consultation, ‘Are you and
your wife related?’ one couple replied, ‘Yes, but only
through our mothers—our mothers are sisters—but not
though our fathers’, implying a weaker genetic link than if
their fathers were brothers. After accompanying the parents
of a child with a recessive condition to the clinic, the first
author was asked by the mother to repeat the consultant’s
379
advice about the inheritance of the condition. The mother
then interrupted the exposition by asking (in Urdu), ‘Are
you saying the material from the mother and father is
equal? Does the father not give more? (bāp kī taraf se ziāda
nāhīn milta)?’ A woman fluent in English and Urdu with
whom the first author was discussing the translation of a
leaflet on recessive inheritance asked her, ‘So the baby gets
genetic material from both sides? So it has to come from the
father and the mother? I thought it just came from the father. I
had never known that’. In the context of a discussion of
marriage arrangements, a woman who had lost three children
in infancy to a recessive disorder and understood her one in
four recurrence risk told the first author she thought it would
be safer to marry her daughter to a maternal rather than to a
paternal relative, saying (in Urdu), ‘if the fathers of the boy
are brothers, there is the most danger’.
Maternal Contributions
Generally, people were hazy about what the mother’s
generative contribution might be. Mrs W said,
to speak about such things is shameful, especially
before marriage.... Even after marriage you don’t find
out what the words are. It is the same for a girl and for
a boy, but here in England, for our children it is
different; now they learn from school and they know
all the words. [Interview in Urdu].
Nevertheless, all respondents considered the biological link
between a mother and child in pregnancy to be very important.
One British-raised mother thought this created a stronger
genetic link between the mother and child than between father
and child. One young Pakistan-raised mother, speaking in
Urdu but using the English term ‘gametes’, asserted:
The gametes from which a child is made come equally
from the mother and father [but] the mother’s
contribution is greater...because for 9 months the child
grows in the mother’s body...the mother does not have
periods and [that] blood goes into the baby. The
mother’s health and the food she eats in pregnancy are
also very important for how the baby develops.
Everyday Theories About Inherited Characteristics
Observations about shared family characteristics recognized
a range of possible inheritance patterns. Sometimes people
remarked on same-sex intergenerational resemblances—a
daughter being like her mother, a son like his father; more
often parents described characteristics as being transferred
from either parent to a child, regardless of sex. One woman,
speaking in Urdu, described her son as ‘dark like my
husband, [but] but talks and eats like me’ and her daughter
380
as ‘fair like me, but...has her Dad’s eyes... [and] her father’s
sister’s hair’. Characteristics such as having blue-grey eyes,
pale skin, or only giving birth to boys were described as
‘skipping’ a generation, showing up in grandchildren, on
the basis of observed family resemblances. People also
sometimes talked about characteristics as being on their
‘mother’s side’ or their ‘father’s side’ of the family, despite
complex consanguinity.
Observed Family History of a Condition
While peoples’ everyday understandings of illness causality,
inheritance and risk were elicited in some of the interviews,
they rarely emerged within the genetics consultation itself.
During clinical consultations, patients rarely indicated that
clinical information did not match their own understandings
(see also Featherstone et al. 2006). Occasionally, though, it
emerged that, despite genetic counseling, patients’ understandings of the inheritance of recessive conditions tended
to stress ‘the mother’s side’ or ‘the father’s side’, in keeping
with observed history of the condition in the family.
Shaw and Hurst
husband’s two younger brothers each have children with
a congenital problem, so it was in my husband’s family
because this is where the problems were. This is why I
thought any children I have with my husband might also
be at risk.... It was not even in our dreams that she [the
younger sister] or her husband could be carriers. He [her
husband] is [my] mother’s sister’s son.
My sister [the one with the new affected baby] always
said it was in our husbands’ family [i.e. Mrs N’s husband
and his brothers] not on our side of the family. We
thought it was only our uncle [Mrs N’s father-in-law,
who is also her mother’s brother] who had passed it on to
his sons and one of them had passed it on to my niece
and nephew. We thought it went through the men, in the
male line. Now I know that this is wrong. We did not
realize there has to be a wife who is a carrier for the kids
to have got it.... It was such a shock. The stress has been
incredible—realizing it is in our side of the family too,
not just in my husband’s side. My sister, the one with the
affected baby, is gutted. She has not even told my Mum
that there is something wrong.
‘I thought it was only in my mother’s family’
Miss S, whose parents are first cousins, her brother and her
mother’s brother’s daughter have a recessive dermatological
condition. She understood the condition ‘was only in my
mother’s family because that’s where the problems are’. At a
second genetics consultation, after discussion of how both
parents must be carriers of a recessive condition for a child to
be affected, Miss S asked, with some astonishment, ‘Does
this mean that my Dad’s brothers and sisters could be
carriers?’ Previously, she had only considered her mother’s
siblings and their children to be at risk.
‘We thought my husband’s family were carriers…through
the men’
Mr and Mrs N, who are first cousins, were referred for
genetic advice because Mrs N’s eldest sister is married to Mr
N’s eldest brother and has children with a recessive
metabolic condition. The couple received a theoretical risk
of having an affected child (1/16) and agreed to carrier
testing, which would rule out the risk of having an affected
child should only one partner be a carrier. The result showed
Mr N is a carrier and his wife is not. Interviewed 18 months
later, Mrs N reported that one of her younger sisters had
recently given birth to a child with the same condition. Mrs N
and the baby’s mother were devastated:
We thought my husband’s family were carriers...through
the men. My older sister is married to my husband’s older
brother. Two of her children have [the condition]. And my
Discussion
This paper has demonstrated a complex array of understandings of the causes of medical and intellectual problems. Some of these understandings concern environmental
factors affecting a child postnatally, such as infections,
accidents and childhood immunizations. Others invoked
prenatal causes in accidental or morally reprehensible
actions performed by the mother or, less often, by the
father, during pregnancy, such as a mother’s insufficient
intake of water as causes of a kidney problem, or physical
abuse from a husband as causing marks of distinctive skin
pigment. A tendency to blame the mother or for mothers to
feel themselves to blame for a problem in a pregnancy or
child is not restricted to British Pakistanis. However, some
understandings (such as a belief in the capricious power of
jinn or the potential for an eclipse to cause pregnancy loss
or birth defects) were expressed in an idiom that reflects the
cultural background of migrants with origins in rural Panjab
or Mirpur, with parallels noted among other British
Muslims of South Asian origin (see e.g. Rozario 2007).
These were also sometimes challenged by the second
generation. On the other hand, in cases of postnatallydetected problems and unexpected infant deaths, some
mothers blamed medical services for not detecting abnormalities early and suspected medical malpractice or
negligence. Their complaints can be viewed as expressions
of women’s covert resistance to being blamed or blaming
themselves for their child’s problem (see e.g. Wilce 1998)
“What is this Genetics, Anyway?”
and to accepting genetic explanations, but also indicate a
need for counseling to address patients’ understandings of
the problem in their pregnancy, infant or child.
Many of the families in this study had little knowledge of
genetics prior to their genetics referral, other than their
awareness of the discourse of genetic risk associated with
cousin marriage. Patients sometimes incorporated genetic
information obtained during clinical consultations into their
prior everyday understandings of illness causality in ways
that did not reflect scientific genetics. Genes or chromosomes were generally understood to be located ‘in the
blood’, or as a characteristics of blood, or as infective agents
rather than as located in every cell of the body and arising
from the gametes at conception. Such misconceptions about
the location of genes or chromosomes, despite ‘conversational familiarity’ with these terms, are not restricted to
British Pakistanis (Lanie et al. 2004). In an American
telephone-interview study, only 34% of American adults
with high school biology thought that genes were located in
every cell, 24% thought they were located in the brain and/
or the mind, and the rest did not know or gave some other
explanation (Lanie et al. 2004).
Among our study participants, the common equation of
blood, genes and chromosomes sometimes led to confusion
over genetic clinic requests for genetic blood tests after
previous blood test results showing ‘the chromosomes are
okay’. The location of ‘the gene’ as ‘in the blood’ rather
than located in every cell of the body was also associated
with beliefs in the potential power of therapies aimed at
removing the gene from the body, through cleansing the
body or through blood transfusion. In one case, a gene was
thought to be located in the spine because chromosome 9
was understood as the ninth vertebra, with potentially
serious therapeutic implications.
Regardless of their place and length of education or their
understandings of how a condition may have arisen, almost
all respondents believed that ultimately only God knows
why a particular condition occurred, for God decides
whether someone is healthy or unwell, lives or dies. This
belief was not incompatible with the pursuit of scientific
knowledge. Acceptance of a pragmatic or scientific
explanation while simultaneously attributing a misfortune
to forces beyond human understanding is not unique to
British Pakistanis or to Muslims (Panter-Brick 1991; Foster
1976; Evans-Pritchard 1976). Genetic explanations may
pose particular cognitive challenges in comparison with
other causal explanations by depending on notions of
probability or chance, which leave a void that appeals to
God’s will serve to fill. Katie Featherstone and colleagues
report that people of White British heritage attending a
genetics clinic in South Wales often attributed being
affected by genetic conditions to fate or destiny, as if in a
kind of biological predestination (Featherstone et al. 2006).
381
For British Pakistanis, acceptance of a genetic explanation
is further complicated by its association with a dominant
discourse of disapproval of consanguineous marriage in
contemporary Britain. Indeed, this issue seemed to overshadow many people’s engagements with genetics. Rather than
being perceived as a statement about elevated risk of a
possible future event, the consanguinity thesis is often
understood as a causal explanation for disability that fails to
match the observed distribution of medical and learning
problems in the Pakistani population in Britain and in
Pakistan. It is thus experienced as stigmatizing British
Pakistanis on account of this marriage preference. During this
research, comparisons of family trees elicited in the clinic with
kin connections described in conversations with respondents
at home sometimes indicated an underreporting of complex
consanguinity in the clinic. This might reflect a desire to
minimize clinical disapproval, the difficulties clinicians
sometimes have with reporting complex consanguinity in
standard medical notes, or a lay or personal theories of
inheritance in which some consanguineous links (such as
additional links through women) may be viewed as irrelevant.
As a result, some risks may be underestimated by clinicians.
When explaining a condition’s inheritance and associated risks, clinicians do not usually emphasize that genetic
information is contained in every cell in the body and
inherited in equal amounts from both parents, but they do
usually consider or mention patients’ everyday ideas about
inheritance, such as their awareness that particular characteristics such as hair or eye color are passed on across the
generations. We found patients’ everyday knowledge of the
inheritance of personal characteristics revealed a range of
understandings of inheritance patterns: a characteristic
might be inherited from either parent, regardless of sex; it
might be inherited only by same-sex relatives across the
generations; it might ‘skip’ a generation, or it might be
associated with the ‘mother’s side’ or the ‘father’s side’ of
the family, references to ‘sides’ of the family being
particularly striking given the cross-cutting ties of consanguinity in many families. This range of understandings of
inheritance patterns implicitly recognizes a male and a
female genetic contribution and is remarkably similar to
that noted among White Anglo-British families, whose
everyday theories of inheritance recognize a ‘bilaterality’
frequently modified by gender, generation or birth order,
for instance in the idea that a condition only affects boys, or
girls, or a first-born, or ‘skips’ a generation, or that a trait
runs through the ‘mother’s side’ or the ‘father’s side’ of the
family (Davison 1996; Richards and Ponder 1996; Richards
1996). As among White British families in South Wales,
such models may offer templates for thinking about risk
that single out particular kin as susceptible in ways that
conflict with biogenetic theory (Davison 1996; Featherstone
et al. 2006). This research has identified an additional
382
cultural blueprint that appears to prioritize inheritance through
men. Mrs N, for example, understood the recessive condition
in her family to be inherited ‘through men, in the male line....
We did not realize there has to be a wife who is a carrier to for
the kids to have got it’. Such thinking may be linked with a
cultural emphasis on the male genetic contribution to a child,
via blood or sperm. However, these ideas may only be drawn
upon when they conform to the perceived family history of a
condition (see also Hunt et al. 2002), and comprise only one
set among a range of understandings of biological inheritance and illness causality.
Regardless of ethnic background, recessive inheritance is
particularly difficult to understand: how can a condition be
inherited when it has never before been seen in the family?
(Chapple et al. 1995). The lack of a known family history
for many rare recessive conditions is not unique to British
Pakistanis (Pembrey 1996). Nonetheless, high infant mortality, no routine investigation of the cause of infant deaths
in Pakistan and poor background knowledge of genetics are
likely to contribute to misunderstandings associated with
inheritance and genetic risk among British Pakistanis.
British Pakistani parents and other relatives of children
with thalassaemia had insufficient knowledge to appreciate
their risk of carrying a gene for this condition, which is
relatively common among British South Asians (Ahmed et
al. 2002). Our study has identified a range of areas in which
British Pakistani clients’ knowledge about genetics, risk
and inheritance in relation to a wide range of mostly
recessive conditions can be improved in order to facilitate
informed decision making.
Implications for Genetic Counseling Practice and Training
Patients negotiate their use of genetic information in
managing reproductive and familiar risk in relation to a
range of social, emotional and cultural factors (see e.g.
Shaw and Hurst 2008). Information provided during
genetic counseling needs to be assimilated within patients’
prior understandings of illness causality and inheritance if it
is to be effective (Richards and Ponder 1996; Richards
1998; Chapple et al. 1995). This paper shows that patients’
prior understandings of the causes of a clinically identified
genetic condition may include a range of environmental or
spiritual factors and reflect poor prior knowledge of
genetics. The paper also shows that genetic information
can be ‘assimilated’ within patients’ prior understandings,
but in ways that may conflict with genetic theory, with
potentially serious clinical consequences. Both observations
are not unique to British Pakistani patients. Some specific
components of these understandings such as the idea of a
gendered parental contribution to genetic inheritance or the
notion that a genetic problem ultimately reflects God’s will
may occur more frequently among particular patient
Shaw and Hurst
groups, but these components of patients’ understandings
of genetics are not limited to any one population and cannot
be assumed to be relevant in any given individual case.
In theory, genetic counseling practice includes first
establishing patients’ prior knowledge of illness causality,
inheritance and risk. In practice, patients’ prior knowledge
is rarely assessed in any systematic way. The findings of
this paper indicate that, when counseling individual
patients, regardless of their ethnic background, it may be
valuable for genetic counselors to elicit patients’ prior
understandings of the causality and inheritance of the
condition they have come to discuss. This might be done
by providing patients with opportunities to describe their
own perception of the condition and their understanding of
its inheritance or etiology. Genetic counselors would also
need to be prepared to challenge mistaken beliefs because
mistaken beliefs may influence an individual or couple’s
reproductive decision-making and risk communication in
the family in clinically significant ways. Further research is
necessary to investigate the most appropriate methods for
eliciting patients’ understandings and working with these to
enable patients to make more fully informed and effective
use of genetic services. The need for clinical follow-up as
well as the timing of such an intervention would also need
to be considered, because patients may not fully appreciate
the significance of genetic information, especially for other
family members, when they first receive it.
In the training of genetic counselors, it would be
important to incorporate awareness of the range of possible
sources of misconception about genetics and the causes of a
genetic problem that all patients may bring to a genetics
consultation. Genetic counselors need to be aware of this
range of ideas when eliciting patients’ understandings and
when presenting genetic diagnostic and risk information
without assuming that any particular idea or set of ideas
will be relevant in any individual case. In fostering what has
variously been described as cultural sensitivity, cultural
awareness or cultural competence in delivering medical
services to socially, ethnically and culturally diverse populations, it is important to instill generic skills and to avoid
stereotyping patients on the basis of assumed beliefs and
practices (see e.g Kai 2003; Papadopoulos 2006); the same
general point is relevant within genetic counseling practice.
Acknowledgements This research was supported by a grant awarded
to Alison Shaw from the Wellcome Trust UK (GR063078MA) and was
prospectively reviewed and approved by the relevant NHS local
research ethics committee. We are grateful to colleagues at the Regional
Hospital for issuing Alison Shaw with an honorary clinical contract for
her research role as a medical anthropologist. We thank our colleagues
in the Regional Genetics Service for their support of this research. We
thank the editor and two anonymous reviewers for the Journal of
Genetic Counseling for their comments and suggestions for revising
this paper. Above all, we thank all of the families who participated in
this study.
“What is this Genetics, Anyway?”
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