Robert Wallerstein, MD

Director, Silicon Valley Genetics Center

Santa Clara Valley Medical Center

GENETICS, CULTURE, AND COMMUNICATION

The knowledge gained in the last few decades through molecular genetic techniques and the human genome

project has revolutionized the practice of medical genetics and medicine in general

INTRODUCTION

The ways in which individuals and families will use that knowledge depend on their own personal background and

values.

Health Professionals will do a better job of communicating if they are aware of, and attuned to, the broad spectrum of approaches and backgrounds that individuals and families

may bring

The purpose of talking about different group is to promote UNDERSTANDING not STEROTYPING

Value systems can be expected to clash, but no family comes to the medical arena without a serious problem for

which they are seeking help.

Is defined as a communication process, a two way experience in which both the patient and the provider

provide information, listen, share, hopefully gain insights.

GENETIC COUNSELING

Health professionals come with a cultural background of their own.

Some recognize the individual nature of their values; others assume that everyone feels and thinks as they do.

This talk is to help attendees become aware of their own cultural backgrounds and inherent values as well as the

diversity of other approaches that are part of modern North America and world perspective.

Very few cultures are homogenous.

Wars, advances in communication, transportation, and computer technology have brought the peoples of the world

closer together than ever before.

WE LIVE IN AN ERA OF DIVERSITY

In previous decades, individuals lived closer to others of similar beliefs and habits, which led to ethnocentric

behavior: the belief that one’s own culture is superior and contains rules of the correct way to think and behave.

This behavior helped to bind people together and gave order to society.

Interactions with individuals who are similar is easier.

To talk about behavior and culture, we have to delineate groups.

This does not mean that everyone in a particular group, society or culture thinks of behaves the same way.

Culture is not limited to specific racial groups, geographic areas, spoken languages, religious beliefs, dress, sexual

orientation or socioeconomic status.

It is too complex.

Culture consists of shared patterns, knowledge, meaning, and behavior of a social group.

CULTURE

In the study of cultural and human diversity, the deeper one delves, the more similarities are found.

Individuals want to live, learn, have meaningful relationships, and count in society.

How they achieve these goals is defined by their culture, which may be affected by geographic area, society, and

access to food, water, and other necessities.

Western technological development has not always improved society and the health of its members.

Refined sugar

Industrialization

pollution

Cultural relativism, learning about another belief system includes respectful behavior and communication between

groups of people- in this case between health care providers and patients.

Arising from a shared set of beliefs about reality and disease.

A belief in science and the beneficial results of technology.

A belief that the mysteries of nature are ultimately knowable.

A belief that the body-like a machine- can betaken apart and fixed when not working properly.

These beliefs contrast with many traditional societies and ethnic groups.

WESTERN MEDICINE IS A CULTURE

As a culture Western medicine has its own language, standards of care, and body of knowledge

Genetics can be defined as a subculture of Western Medicine. There is a specific language ( genes, chromosomes, microarray).

We have unique patterns of behavior, sometimes different from those of Western Medicine. Not only is the patient evaluated, but genetics professionals actively seek out other family members at

risk.

Genetics professionals are driven in their desire to relieve suffering from genetic disease. However, the definition of

genetic burden may vary from culture to culture.

We need to be mindful of as we strive for goals that we think are worthy that our own basic premises about the nature of reality may

not be shared by members of other cultural groups.

Tenets of Technology Utilizers:

Scientific knowledge is good and useful.

Humans should try to know whatever can be known about themselves.

Manipulation of the building blocks of life is desirable.

Some religious groups see probing and manipulation of genes as interfering with fate. They assert that genetically handicapped have

their appointed role to play in life; they should not be screened out of existence.

The Human Genome Project has run up against opposition from a number of indigenous groups (Native Americans and

Australian Aborigines) who fear that their genes will be utilized by scientists to improve the genetic strength of the

groups that have been their oppressors for hundreds of years.

The Human Genome project views these groups as a valuable part of human diversity.

Some groups view the human Genome Project as invasive and dominating.

The scientific drive to understand human genes has led to a revolution in information.

The development and application of new genetic technologies is only in its infancy.

This knowledge is exciting and awe inspiring yet at the same time bewildering and frightening.

New gene discoveries prompt new questions every day.

Is proved by individuals not robots. A robot would have no compassion, no past experiences, no good or bad feelings about

patients.

Every health care professional is part of a culture evident in:

Dress

Food

Religion

Norms of life

Family size

All health care professionals have past experiences that influence their interaction with others.

COUNSELING

Our education teaches us that one purpose of health care is to help patients reach their full potential.

For this reason, we educate patients and their families about choices regarding management.

Patients have choices, but what verbal or non-verbal cues do we give the patient to make the “correct” choice. We

are invested in the outcome.

GOAL

For example:

An “uneventful pregnancy” for the health care provider is very eventful for the couple.

A positive family history is usually negative for the patient.

A positive test is usually bad news.

LANGUAGE IS IMPORTANT

Race does not always define culture nor does religion nor residence.

Stereotypes may have accuracy of description, but they run the risk of distortion through a lack of understanding.

RACE AND CULTURE

Barriers to effective communication multiply when individuals:

Have a different first language

Come from a different geographic area

Have different expectations of physicians

Have an education rooted in spiritualism rather than science

The majority of North Americans are of European ancestry

EUROPEAN CULTURE IN NORTH AMERICA

On the whole, Europeans who came to North America chose to leave their home land for specific reasons

Therefore, there is a section bias between those who stayed and those who traveled, being strongly motivated for a

better life.

These groups were from the British Isles, Germany, Scandinavia, Russia, Italy, Eastern Europe and the

Mediterranean

The geography of the land contributed to a variety of subcultures to develop in different regions

EUROPEAN CULTURE IN NORTH AMERICA

Religion

86.5% Christianity

26% Roman Catholic

19% Baptist

8% Methodist

5% Lutheran

The remainder belong to smaller denominations

Of those affiliated with a religion, many do not practice.

Beliefs about family structure, reproductive technology, contraception, health care, abortion and death vary greatly in different denominations

EUROPEAN CULTURE IN NORTH AMERICA

On the whole, Americans of European ancestry do not consider themselves to be superstitious

They consider the traditional family to be mother, father and children.

Many couples have 1 or 2 children and are highly invested in their health and survival to adulthood.

Single parenthood is becoming more common.

Family structures vary greatly.

EUROPEAN CULTURE IN NORTH AMERICA

It is accepted that 2 people will stand arm’s length apart for ordinary communication.

Touching is reserved for intimate relationships of friends and families ( other than hand shake).

When 2 people are introduced, they will shake right hands (never left).

A firm handshake is considered the sign of a strong person.

A person who avoids eye contact is considered untrustworthy.

EUROPEAN CULTURE IN NORTH AMERICA

Values:

Productivity

Time

Individualism and Privacy

Initiative and Responsibility

Equality

Affluence and Acquisitiveness

Technology

Directness and Honesty

Mobility

EUROPEAN CULTURE IN NORTH AMERICA

Beliefs about health

Most believe that illness results from one of three processes:

1. Interaction between pathogen and host

2. Accidents of development leading to congenital defects

3. Natural degeneration

The patient has fallen victim to a set of unmediated processes that call for technical intervention.

Technical intervention has a very no-nonsense approach.

EUROPEAN CULTURE IN NORTH AMERICA

Treatments are generally concrete and rarely include a metaphysical or spiritual component.

Treating with meditation instead of medication is treated suspiciously.

They are accustomed to tangible and scientifically proven treatment.

There is great respect of Western Medicine and an assumption that it can fix everything.

EUROPEAN CULTURE IN NORTH AMERICA

There are certain expectations about behavior during a medical interaction.

Because autonomy is valued, they expect to participate in medical care.

They want choices.

They want privacy for an exam.

They want appointments to run on time.

EUROPEAN CULTURE IN NORTH AMERICA

Birth defects and genetic disease which are viewed as accidents of development represent a challenge to be

overcome with creative, practical, and technical intervention.

Many prefer to know during a pregnancy whether there is a birth defect.

They wish to have a choice about continuing or terminating an affected pregnancy.

Carrier testing is appreciated.

They appreciate technology that provides information.

EUROPEAN CULTURE IN NORTH AMERICA

Genetic disease represents a challenge to the belief that people create their own future.

Often a family’s response to the challenge is to do everything possible to cure the child.

This approach benefits the child and family, it also conveys a lack of acceptance of disability.

Families are generally accepting of family support groups.

EUROPEAN CULTURE IN NORTH AMERICA

The ultimate challenge is death. There is loss of autonomy. There is nothing that affluence, technology, or initiative can

do about it.

Because of this, the norm is to avoid discussion of death.

EUROPEAN CULTURE IN NORTH AMERICA

Very diverse cultural group and refers to the people, speech, and culture of Spain, Portugal, and Latin America

There are 5 (oversimplified) groups in the US

Mexican American

Puerto Rican

Cuban American

Central or South American

Other

Native Americans, Spaniards, African natives have all contributed to contemporary Hispanic populations

HISPANIC CULTURE

According to US Bureau of Census, 22 Million Hispanics live in the US.

63% are Mexican American

12% Puerto Rican

5% Cuban American

10% Central and South American

8% other

87% live in urban areas

52% are located in California or Texas

HISPANIC CULTURE

The Hispanic population is the fastest-growing minority group in the US.

The number of Hispanic persons is growing 5X faster than any other ethnic group due to immigration and high birth rates.

Hispanics have a lower income, shorter life expectancy, more crowded housing conditions, fewer professional jobs, and a lower proportion of

high school graduates (US Bureau of Census)

(13.5% of Hispanics have less than 5 years of schooling compared to 2% of the overall population).

(25% of Mexican Americans and 38% of Puerto Ricans live below the poverty line.

(33% of Hispanics most of whom work have no health insurance, compared to 15% of non-Hispanics.)

HISPANIC CULTURE

Religion

Most but not all are Roman Catholic

Other beliefs such as Protestant, Baptist and Jewish faiths are followed

The Roman Catholic Church has restrictions regarding artificial birth control, and abortion

Many refuse prenatal diagnosis due association with abortion.

Some individuals disagree with church policies so health care providers should not make assumptions.

Diversity rather than uniformity influences choices and decisions.

HISPANIC CULTURE

Family

Hispanic families are on average larger than non-Hispanic families.

54% have more than 4 individuals.

Traditional Hispanic family structure is patriarchal.

Familismo: Immediate and extended family members participate in every decision.

Interdependence is emphasized over independence.

Affiliation over individualism

Cooperation over confrontation.

Padrinos (godparents) are usually chosen before birth and are expected to have an important role in the child’s life.

HISPANIC CULTURE

Family

Children are an essential part of the family. The loss of a child or a pregnancy represents loss of expectations and hopes for future.

In a study by Mary (1990) about reactions to having a child with a handicap, Hispanic mothers displayed more of a sense of sacrifice,

which was even more significant when the family was of lower socioeconomic status, than North American European or Africa

American mothers.

In 20 families studied, 7 fathers were in complete denial about their child’s disability.

Beliefs about Health cannot be generalized

Curanderismo- folk healing

Three most common beliefs about cause of illness:

1.Natural and supernatural forces

2. Imbalances of heat and cold

3. Emotions

A common belief is that cleft lip is caused by supernatural forces during an eclipse.

The evil eye (curse) can cause all kinds of congenital anomalies.

Mal aire “cold” or “bad air” can cause pain, cramping, facial twitching and paralysis due to imbalance of hot and cold. There is folk belief that many mothers are hesitant to

take their children from a warm room into the cold especially after waking. It is important for helath care providers to keep an infant covered as much as possible to

prevent mal aire.

HISPANIC CULTURE

Beliefs about health

Strong emotions can cause symptoms.

Illnes is a state of physical discomfort so if a personhas no pain, he is presumed to be healthy.

Folk healers:

Curandero- a healer with the “gift” of healing. Use the family as a support mechanism

Sobrador- a healer who treats illness with massage

Home remedies often sought

HISPANIC CULTURE

Vietnam is a country with mixed terrain. The north is mountainous and the south is flat formed by the Mekong

Delta.

Despite domination by China, Japan, and France, Vietnam has maintained its identity.

Fighting about separation and re-unification of the country lead to many years of conflict. More than 1 million people has sought asylum and an estimated 2 million were killed.

Many came to United States not of their own volition, but to escape conflict.

Most refugees from Southeast Asian countries have much in common: displacement, loss of family, witnessing atrocities, and prolonged stays in refugee camps.

VIETNAMESE CULTURE

Religion

Buddhism is the dominant religion.

One third of Vietnamese immigrants are Catholic

There is often a belief in spiritual and supernatural powers.

Everything is believed to possess a soul.

Many Vietnamese worship ancestors.

There is a strong belief in the power of all living creatures to change destiny.

VIETNAMESE CULTURE

Family

Family is the center of culture and society

The immediate family includes, husband, wife, children, and son,s wives.In many Vietnamese families, women have limited status until

they have a son.

Parents often make great sacrifices for the welfare of the family.

Vietnamese often dress infants on old clothes during the first month to prevent spirits from being jealous.

Dependence on the social group is encouraged.

Elders expect to live with the family.

Reverence to elders is expected.

An individual’s behavior reflects on the family and can cause pride or shame to both living and deceased.

VIETNAMESE CULTURE

Strong traditions and sense of familial security lend a sense of permanence.

Life is considered a cycle of events.

Sense of time urgency varies from Western culture.

VIETNAMESE CULTURE

Communication

Many medical terms have no Vietnamese equivalent and translation is difficult.

For many, the principal goal of language is to promote unity and harmony. Therefore, conversation may have shaded meanings, indirect intent, and many non-verbal clues.

Often, a bowed head or indirect eye contact is used with people of authority.

Control of emotion is valued.

People are addressed from older to younger.

VIETNAMESE CULTURE

Human suffering is considered a part of the natural order so the individual must accept fate and show restraint.

Grief is private.

VIETNAMESE CULTURE

Beliefs about Health

Illness falls into three categories:

1. Physical

is caused by accidents or eating spoiled food

2. Metaphysica

Is caused by bad wind, imbalance of hot/cold energy, incorrect diet, or excessive emotion

3. Supernatural

Is caused by spirits or the loss of one’s soul

VIETNAMESE CULTURE

Remedies vary from family to family.

Health care providers include: Herbalists, Shamans, soul callers, Buddhist Monks, and Pharmacists.

Belief in karma and fate is strong and may extend to both living dead family members.

The head is the seat of life and is untouchable.

Using sharp instruments or a knife may cause miscarriage or clefting.

VIETNAMESE CULTURE

Some groups consider disability or intellectual disability a stigma while others believe in reincarnation and the obligation to care for

the special person in this lifetime.

The disability may be seen as punishment for sins of the ancestors and they must atone.

Many families rely on a blend of Western and Eastern medicine.

It is wisely believed that a person is given a lifetime supply of blood at birth so blood loss and multiple tests pose problems.

White is a color of mourning and bad luck so white coats are a problem.

VIETNAMESE CULTURE

1. What do you call the problem?

2. What do you think has caused the problem?

3. Why do you think it started when it did?

4. What do you think the sickness does? How does it work?

5. How severe is the sickness? Will it have a short or long course?

6. What kind of treatment do you think the patient should receive? What are the most important

results you hope to receive from this treatment?

7. What are the chief problems the sickness has caused?

8.  What  do  you  fear  most  about  the  sickness?

ARTHUR KLEINMAN’S EIGHT QUESTIONS

1) What do you call the problem? Qaug dab peg.  That means the spirit catches you and fall down.

2)  What do you think has caused the problem? Soul loss.

3)  Why do you think it started when it did? Lia's sister Yer slammed the door and Lia's soul was frightened out of her body.

4)  What do you think the sickness does?  How does it work? It makes Lia shake and fall down.  It works because a spirit called a dab is catching her.

5)  How severe is the sickness?  Will it have a long or short course?Why are you asking us these questions?  If you are a good doctor, you should know the answers yourself.

6)  What kind of treatment do you think the patient should receive?  What are the most important results you hope she receives from this treatment? You should give Lia the

medicine to take for a week but no longer.  After she is well, she should stop taking the medicine.  You should not treat her by taking her blood or the fluid from her backbone.

 Lia should also be treated at home with our Hmong medicines and by sacrificing pigs and chickens.  We hope Lia will be healthy, but we are not sure we want her to stop shaking

forever because it makes her noble in our culture, and when she grows up she might become a shaman.

 7)  What are the chief problems the sickness has caused? It has made us sad to see Lia hurt, and it has made us angry at Yer.

8)  What do you fear most about the sickness?That Lia's soul will never return.

ONE FAMILY’S ANSWERS TO ARTHUR KLEINMAN’S QUESTIONS

We have 2 ears and one mouth so we can listen twice as much as we speak.

I hope that this has been a though provoking talk to help you think about your own set of cultures and how we can all

interact with the families that we care for in a better way.

Thank you.

AN OLD PROVBERB