Introduction
Because of their welfare and relatively economic and political stability, the postindustrial countries in the world are preferred by immigrants, which results in the increasing diversity of the population of these countries in terms of multiethnicity. It also resulted in a diverse composition of the reproductive women’s population, which asks for the competence and knowledge about cultural, religious, and ethnic diversity, which is conditional for the provision of high-quality and value-based healthcare by reproductive caregivers, including genetic counselors.
In comparison with native pregnant women, immigrants are at a higher risk of adverse pregnancy outcomes and insufficient prenatal health-care utilization ( ). Also consanguinity is more often seen within migrant couples, which makes genetic counseling more needed ( ).
Especially for immigrant pregnant women, a prenatal diagnosis of a fetal anomaly leads to an unexpected personal tragedy due to more compelling religious and cultural beliefs and convictions ( ; ). Tailored prenatal genetic counseling given in a respectful and empathically psychological way, addressing cultural and religious values, is desirable to meet the needs of pregnant women with an immigrant background ( ). For prenatal genetic counselors, it is recommendable to understand the sociocultural and religious underpinnings of immigrant pregnant women regarding prenatal diagnostics as a first step to engage these women in shared and informed decision-making.
This chapter will inform about addressing diversity in prenatal genetic counseling, starting with an exploration of the concepts of cultural, religious, and ethnic differences. Further, an elaboration of the existing inequalities in prenatal healthcare and experiences with provided care within a multiethnic women’s population is provided, followed by best practices for tailored prenatal genetic counseling with specific attention for themes to discuss during counseling, communication, the role of the interpreter, health education , and community-based practical instructions . The chapter will end with a self-assessment to test the gained knowledge.
Concepts of cultural, religious, and ethnic differences
The position, beliefs, and behavior of a pregnant woman and her social network are in varying degrees influenced by ethnicity, and cultural background and religious beliefs. Knowledge about these concepts and the influence on the individuality of the patient can provide the prenatal genetic counselor starting points for an open conversation about assumptions, beliefs, and attitudes toward genetic screening and diagnostics. Genetic counseling based on health education and decision-making support, which is, when needed, adjusted to the knowledge, and cultural and religious background of the pregnant women, contributes to the development of a trustful patient relation and a value-based care ( ). Since concepts of culture, religion, and ethnicity have a related connection, it is first necessary to frame these background characteristics separately.
Ethnicity
Ethnicity frequently features in the political, healthcare, and research context, but it is rarely theorized ( ). Popular theories might often suggest that ethnicity is grounded in biological differences between individuals and groups, but from the perspective of social psychology and epidemiology, ethnicity is defined as a social construct ( ).
Ethnicity is a context-specific, multilevel (group or individual), and multifactorial social construct that is related to race. The concept of ethnicity is used to differentiate diverse subgroups within a population of a specific region. The largest ethnic group within the population is called the majority and smaller ethnic groups have been called minority ones ( ).
As conceptualized by , ethnicity can be defined as a two-dimensional, context-specific social construct ( ). First is an attributional dimension group characteristic, for example, culture and nativity and second is a relational dimension that indexes a group’s position within a social hierarchy (minority vs majority ethnic group).
The societal context in which people live determines whether they can be categorized in a specific ethnic group. Individuals in the same ethnic group share a same set of sociocultural characteristics. Factors, for example, cultural and religious habits and behavior and being part of a numeric minority reinforce ethnicization of an individual or group ( ).
Culture
, one of the founders of cultural studies, underlines in his publications that the concept culture is one of the most complex-to-define “words” in English. The meaning of culture must be conceptualized from different perspectives ( ). In this paragraph, we elaborate the concept of culture based on the theory of .
During the socialization of an individual (group), culture is transferred to the developing child and young adult ( ). According to , culture gives meaning to the world and makes it understandable from the perspective of an individual or group ( ). Notwithstanding the fact that cultural behavior is not always notable, all human beings are part of a specific cultural group. Culture is a phenomenon that is shared between individuals that live or lived in the same social environment ( ). Culture can be defined as a specific collective mental programming of a group of individuals that differentiates that group when compared with other cultural ones ( ). Based on the theory of , culture is built on five basic components: values , norms , rituals , heroes and symbols . Values are defined by the value or meaning that is connected with a specific material, event, or behavior. Norms consist of the behavioral rules within a cultural group. Rituals are specific cultural acts or proceedings that are prescriptive or especially forbidden within a cultural group. Within a culture that is fictive or real, individuals or entities can have a valuable position and are framed as heroes within a group culture. Symbols are signs and objects that have a large meaning within culture.
These components are expressed in cultural behavior and have a different priority and position within the expression and practice of a specific culture. As shown in Fig. 5.1 (religious), values function as the core influencing component of a culture, which determines cultural behavior concerning rituals and the definition of heroes within the culture. The use of symbols within a culture group, for example, wearing a scarf, is based on Hofstede’s Cultural Onion, the most surface element of culture and usually the most recognizable for outsiders (not members of the cultural group) like health-care professionals.
Example of cultural behavior
To explore the concept of the culture of pregnant women within the setting of prenatal genetic counseling, an example of the five components of culture from the perspective of a North African (Moroccan) pregnant woman follows next.
The situation
Fadma, 29 years old, is pregnant with her second child. She has a first-generation Moroccan immigrant background, is married, and has an intermediate educational attainment level.
She had a fetal anomaly scan at a gestational age of 20 weeks and 2 days. The scan shows structural anomalies that indicate that she carries a child with Edwards’ syndrome. The sonographer and the midwife give a short posttest counseling and refer her for an advanced ultrasound scan in the hospital. The scan confirms the previous findings and the sonographer refers her to a clinical geneticist for prenatal genetic counseling. Decisions about participation in invasive prenatal diagnostics and continuation or termination of the pregnancy must be made.
Values
Fadma believes that her pregnancy is given from the hands of Allah. She considered not to participate in the first trimester prenatal screening for Down syndrome, Edwards’ syndrome, and Patau’s syndrome, because she accepts her unborn child with or without possible congenital disorders. She undergoes the second trimester fetal anomaly scan, because she thought it was a part of the standard care and she wants to know the gender of her unborn child.
The unfavorable outcome of the ultrasounds causes an inner struggle for Fadma. Before the test she did not take into account the unexpected outcome of the prenatal screening and diagnostic ultrasound scans. She doubts if she wants to go to the clinical geneticist for prenatal genetic counseling but finally decides to go. The clinical geneticist describes the characteristics of the syndrome and the possibility to definitely diagnose (amniocenteses) the syndrome within this pregnancy. Fadma experiences the given information as harsh. She does not want to hear such worrying information about her unborn child. The possibility for participation in prenatal invasive diagnostics feels like an illogical option. Does she want more information or is it better to wait and see what the lessons of Allah will be? Based on her personal values, it feels better to do nothing at all. Her husband convinces her to undergo the amniocenteses, using a little pressure by telling a story about his nephew having multiple disabilities. This invasive test confirms a triploidy on chromosome 18, but she decides to continue her pregnancy. Despite the uncertainty of her husband about this choice, she is convinced about her decision based on religious values.
Norms
Within her family and social environment, it is not done to undergo prenatal screening or prenatal diagnostics. This is based on the assumption that these prenatal tests by definition lead to the termination of pregnancy when the unborn child is diagnosed with an anomaly.
Fadma made a not-informed decision about undergoing the fetal anomaly scan and after the outcome of the test, she must now consider whether or not to accept the referral for follow-up tests and prenatal genetic counseling. She doubts if it is appropriate within her culture to undergo diagnostic tests and if it is wise to get herself in a position that the doctor at some point asks her if she wants to end the pregnancy. After motivating conversations with her husband and sister in law, she decides to undergo the advanced ultrasound scan, go to the prenatal genetic counseling, and consult and participate in the amniocenteses. Especially the approval of her husband for the participation in the prenatal diagnostics was important for Fadma.
After the confirmation of Edwards’ syndrome by the amniocenteses, a second consultation by the clinical geneticist follows. In this meeting, Fadma stated clearly that she wants to continue her pregnancy based on her religious convictions and behavioral rules. She recently consulted the Imam to discuss what to do when the outcome of prenatal diagnostics was unfavorable.
Heroes
Within Fadma’s cultural group the Imam has an important position as a wise man who has the knowledge about the Qur’an and the Sunnah (the way in which prophet Mohammed lived his life, which is for Muslims within Fadma’s cultural group an example of adequate behavior in specific situations of life). Fadma’s choice for continuing the pregnancy was mainly based on the opinion of the Imam that termination of pregnancy is prohibited after 4 months when there is no life-threatening danger for the mother.
Rituals
From the moment Fadma knew she was pregnant, she always ate what she liked. She was influenced by the assumption within her cultural group that if she does not eat what she likes when she is hungry, it can lead to the malformation of the unborn child. After the diagnosis that her child had Edwards’ syndrome, she asked herself for a short moment if she lacked eating a specific kind of food.
Symbols
From the start of her pregnancy, Fadma wears a necklace with the eye of Fatima, because she believes that it protects her unborn child from “the evil eye.” Although she knows that it is a cultural-based superstition and forbidden in the context of her Islamic religion, she finds the use of this symbol important, especially in the period of uncertainty during this pregnancy.
Collective versus individualistic culture
There are numerous cultures and subcultures. Even within a country, there are significant differences in culture when comparing urban areas with rural areas. To be able to make a distinction between cultures a differentiation can be made in culture dimensions as, for example, among others, the collective and individualistic cultures and feminine and masculine cultures ( ). These cultural dimensions differ when comparing countries ( ). Characteristics of these four categories of culture are as follows:
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Collective culture is a “we culture.” The interest of the group holds the most importance within this culture. Group cohesion is strong within this culture and indirect communication with the avoidance of confrontation is common.
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Individualistic culture is an “individual culture.” Members of this culture group care for themselves and only for their direct family. A direct communication style is common.
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Feminine culture is based on the assumption that having a high quality of life is a sign of a successful life. Equality and solidarity are important elements in this culture. Conflicts are resolved by compromises and negotiation.
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Masculine culture is characterized by the urge for competition, performance, dedication, and the pursuit to have success. Conflicts can be resolved by fighting them out.
Religion
Worldwide, there are numerous religions and spiritual traditions with their submovements. It is impossible to give a standard list with all religions and spiritual traditions and their appearances, because these are dynamic and constantly changing due to globalization and migration. Like with the concepts of culture and ethnicity, it is hard to define religion. provided an internationally accepted definition of religion in religion studies:
(1) a system of symbols which acts to (2) establish powerful, pervasive, and long-lasting moods and motivations in men by (3) formulating conceptions of a general order of existence and (4) clothing these conceptions with such an aura of factuality that (5) the moods and motivations seem uniquely realistic.
The four basic functions of religion are as follows ( ):
- 1.
social cohesion: bonding between individuals within a group;
- 2.
social control: behavioral norms;
- 3.
to provide meaning: values for what is wrong or good;
- 4.
purpose of life.
Abortion and religion
Islam
The rulings and regulations of Islam are based on the protection of basic human rights and the preservation of one’s life, possessions, and intellect. These are fundamental principles and remain the same in different cultures and times.
The first two sources of the Islamic rulings and regulations are the Qur’an and the Sunnah. The Qur’an is deemed to be the literal word of God (Arabic: Allah ). To understand the Qur’an the Muslims rely on the interpretation of the Qur’an by the Prophet Muhammad first, and then by his companions as they witnessed the revelation firsthand and knew what the verses were about. This explanation of the Qur’anic verses is collected in the exegesis of the Qur’an, which is called the Tafsir . There are various Tafsirs written over time, the most well known being the Tafsir of Ibn Kathir and the Tafsir of Tabari ( ).
The second source of the Islamic rulings is the Sunnah of the Prophet Muhammad. The Sunnah consists of what the Prophet said, what he did, and silently accepted. These are written down in the form of short stories narrated by the companions of the Prophet; these short stories are called Hadith . The most renowned Hadith collections are Sahih al-Bukhari and Sahih Muslim.
When it comes to the interpretation of the Qur’an and the Sunnah, and rulings of modern-day issues which were not present in the time of the Prophet Muhammad, Muslims refer to the Islamic scholars for their verdicts and explanation. This was commanded in the Qur’an: “So ask the people of the knowledge if you do not know” (The Noble Quran 21:7) and “Had they only referred it back to the Messenger and back to those in authority among them so that those of them who know how to extract it (the ruling) would have known it…” (The Noble Qur’an 4:83). Al-Tabari mentioned in his Tafsir that various prominent companions of the Prophet, like Ibn ‘Abbas, said that “those in authority” mean the scholars. Ibn Kathir stated in his Tafsir that “those in authority” refer to the scholars and the Islamic rulers. These verdicts issued by Islamic scholars are called fatawa (singular: fatwa ) and are only to be issued by senior Islamic scholars who are known for their broad knowledge and long study of various Islamic topics.
Generally, abortion is not permitted in Islam except due to an Islamically justifiable reason. Such reasons include endangerment of the health of the mother or pregnancy out of wedlock. In the second example the justification is the covering of a sin. Fear of poverty or wishing to limit the number of children that one has is not considered justifiable reasons.
Some Islamic scholars have stated that an abortion is only allowed up to 40 days after conception, while other scholars say that an abortion is allowed up to 17 weeks after conception. According to Islam, the soul is blown into the fetus after 17 weeks, and this is when the fetus is considered a person. For this reason the favored stance on this issue is the abortion may take place until 17 weeks after conception.
After 17 weeks, abortion is prohibited except if carrying through with the pregnancy is life threatening for the mother. In this case the life of the mother takes precedence over the life of the child and the pregnancy may be terminated ( ).
Other religions
Christians base their beliefs on the Gospels in the Bible. How the Bible is explained and implemented in daily life varies between different Christian groups. In Christianity the view on abortion varies between the different Christian denominations, and even within a denomination, opinions can differ, or views change over time. Within Christianity, views range from antiabortion to prochoice.
The Jewish Encyclopedia makes a distinction between the teachings of Moses and Rabbinic Judaism ( ). The second is considered mainstream Judaism in the present day. Rabbinic Judaism is based on the written law (Thora) and oral law (that was later written down in the Talmud). The written law alone was seemed insufficient as a guide for Jewish life, as the commandments needed further explanation of how to be carried out ( ).
There is some difference within Judaism, as in all religions, about the legality of abortion. In general, abortion is not deemed permissible. In the case, carrying the fetus is life-threatening for the mother, an abortion is obligated. The abortion of a child out of wedlock is forbidden.
Examples of culture and religious assumptions and beliefs during pregnancy
There are a number of beliefs and assumptions surrounding the pregnancy in different cultures and religions. Each culture has its own assumptions. A lot of the assumptions that are deemed religious stem in actuality from culture. In the modern day and age, where science has made major advancements, we should expect for baseless assumptions and beliefs to vanish, but some beliefs are still present and can influence the thought process, emotions, and actions of pregnant women around the world.
One belief for instance is that a pregnant woman should eat whatever she craves; this belief is shared by various cultures, from Hispanic to Middle East ( ). In some Middle East countries, it is believed that a child takes his birth with a mark in the shape of the food his mother craved, if her craving is not fulfilled. As a result, women eat everything they feel like, which can lead to unhealthy eating habits. An example of a belief, which is persistent in Western countries today, is the belief that the shape of the pregnant woman’s stomach can give away the sex of the unborn child.
Case 1
Maudy, 39 years old, Surinamese descent, born in the Netherlands
During my first pregnancy, I did not use prenatal screening. My son was born with PDD-NOS, which is an autism spectrum disorder. In my culture, we say when a couple argues during pregnancy, the chance the child is born with a disability increases. During my pregnancy, my partner and I separated. I have long regretted not using prenatal screening of my son and I felt guilty his disability could be my fault.
During my second pregnancy, I did use prenatal screening. During the screening the midwife explained everything looked fine. She told me prenatal screening tests could identify certain birth defects, but disorders like PDD-NOS could not be identified. She also said I was not to blame for my son’s disorder. When I learned this, I felt relieved.
My experience taught me that every pregnant woman has the right and the duty to check information based on cultural myths.
Case 2
Salima, 32 years old, Moroccan descent
When I was 3-month pregnant, an ultrasound was made. It did not look well, as I had too much amniotic fluid in the womb. I was sent to the hospital for further examination. Upon examination the doctor determined that the baby had a chromosome abnormality. To determine which abnormality it was, further examination was necessary. After the amniotic fluid test, it turned out that the baby had Down syndrome. She also possibly had a heart condition. The prognosis was not good.
The gynaecologist said, “I could have the baby aborted up to 24 weeks of pregnancy.” He said I could have complications during the pregnancy and birth if I did not have the fetus aborted, which would have an impact on my mental well-being. The doctor urged us to consider an abortion. We refused though. Due to our religious beliefs, we did not want to abort the baby. If the baby would not make it, this would be God’s will. And the Qur’an states, “Allah burdens not a person beyond his scope” ( Chapter 2 , verse 186). Because the doctor did not support us in carrying through with the pregnancy, we requested to see a different doctor.
It was a difficult time. When I searched the internet, I only found discouraging information. I was disappointed by the lack of support I received at the hospital. I prayed to God to make things easy for me. My family and the Islamic community did support me in my decision not to have an abortion. I noticed within our community, people accepted that this was the Will of God.
After 6 months of pregnancy, it appeared that the extra fluid was gone. The heart of the baby also looked fine. After birth the baby only had Down syndrome, she did not have birth defects. I am grateful for my beautiful little girl. She was meant to be with me. When I look at my daughter now, it upsets me how the first gynecologist pressured us to have an abortion. Sometimes I want to go to the doctor and tell him how happy I am with the child he wanted me to abort.
I noticed people with the same cultural background as me sometimes do not know what to say when they hear a child has Down syndrome. Or when they have a child with Down syndrome, they are ashamed and cannot accept it. This can result in awkward situations. Once for instance, I saw another child with Down syndrome at the playground. I walked over to the mother and told her my child had Down’s syndrome too. To my surprise the mother denied the child had Down syndrome. I think it is sad to be ashamed of your child and that is a sin.
I see my child as a blessing and a trial for me. I believe that God tests those He loves. I am happy to have her in my life. My religion helps me. My advice to medical professionals is to respect the choice of a mother, whatever her cultural or religious background may be.
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