pp. 233-237 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
6.7. Ethical Issues on the Provision of Genetic Services to the Asian Population of New York City.
Victor B. Penchaszadeh and Diana PuZales-Morejon.
Beth Israel Medical Center, Albert Einstein College of Medicine, WHO Collaborating Center for Community Genetics and Education, New York, USA.
Data from the Population Census Bureau reveals that the United States is currently experiencing its greatest and most diverse ethnic migration since pre-WWI. It is estimated that by the next century, one out of every four Americans will be an ethnic minority.
Population projections postulate that by the year 2056, Caucasians may be a minority in the United States comprising less than 50% of the total USA population. This is a decrease of 40% from 1920. The Population Census Bureau has projected for the 1990fs a population increase of 21% for Latinos, 22% for Asians, 12% for African-Americans and 2% for Caucasians (US Dept. of Commerce, Population Census Bureau).
Persons of Asian descent account for the greatest percentage of foreign born in the US (68.2%), while Hispanics comprise the next largest group of immigrants (26.6%). Further analysis of Asian population characteristics indicate that among persons of Asian ancestry, the Chinese constitute the largest ethnic minority, that is, approximately 1 out of every 4 persons of Asian descent in the US is of Chinese heritage (OfHare and Felt, 1991).
New York Cityfs Chinese community ranks as the third largest such group in the United States. Approximately 45% of the total number (693,760), of Asian/Pacific Islanders in New York City are of ethnic Chinese origin with the greatest percentage residing in Manhattan. An estimated 75% of the Chinese community are foreign-born and almost 85% speak Chinese at home. Genetic services are expanding dramatically, especially in urban centers where new immigrants are likely to reside. With the growing number of immigrants in the United States, culturally appropriate and sensitive genetic services need to be provided. For genetic services to be adequately utilized and accessible to this fast growing population, the Division of Medical Genetics of Beth Israel Medical Center was awarded a grant in the Fall of 1988 from the New York State Department of Health to develop a model program for the provision of culturally compatible genetic counseling services to the Chinese community of New York City. The majority of the Asia American population served in our program were immigrants from China and Hong Kong (70%). Fifteen percent came from Taiwan and 15% from other Asian countries. Most Chinese patients (70%) spoke Cantonese while 30% spoke Mandarin. The main occupations were garment factory and restaurant workers. The education level was equivalent to the 8th grade for 60% of the population. Sixty-five percent had been in the US for less than 5 years. This group was found to be underserved primarily because of ethnocultural, educational and economic barriers in the provision of genetic services (Penchaszadeh et al, 1990).
The outreach counseling program developed included the following (Punales-Morejon, D. et al 1990):
a. Assessment of specific barriers to genetic counseling
b. Training of a bilingual/bicultural genetic counseling assistant
c. Identification of cultural beliefs and attitudes towards health, illness and disability
d. Collation of data on the genetic needs, demographics and patterns of utilization of the targeted community
e. Development an dissemination of bilingual educational materials and programs
f. Use of a sliding fee scale (based on income) for services
g. Provision of genetic counseling services by a bilingual/bicultural genetic assistant under the supervision of a genetic counselor.
2. Barriers to service delivery
One of the most obvious barriers for genetic counseling is language. The Chinese language differs not only in pronunciation and phonetics from English but within regions, different dialects are spoken. The profession of genetic counseling developed to translate the discourse of human genetics into a more colloquial and popular language. The genetic counselor and patient become bound and limited by their own communicative resources. When communication requires translation, an inhibition of rapport between the counselor and the counselee often occurs. Selective translation or breeches of confidence may also arise when using translators. In addition, certain genetic words and phrases do not translate readily.
Ethnocultural distinctiveness is perhaps the greatest barrier to receiving care. Patients may have their own cultural interpretation for the cause of birth defects and genetic disease as well as have culturally-founded concepts of health, illness and disability. The use of home remedies and folk medicine can also ginterfereh with prescribed medications. Nondirective genetic counseling can seem confusing and unfamiliar to some ethnocultural groups who have specific role expectations for authority figures and medical professionals. (Jung, 1996) The Chinese culture places great significance and respect in authority and the elderly. (Chan, 1992) When placed in the context of patient/doctor relationship, the Chinese patient may feel reluctant to ask questions and/or expect direct consultation. This is in contrast to the expectations of the genetic service provider. Genetic counselors are trained to take the position of ethical neutrality, favoring and stressing personal choice. The genetic counseling process assumes that the patient can and must decide for him or herself. The Chinese individual strives to maintain family integrity. Thus, the impact of an illness in the family brings disgrace and embarrassment. The birth of an abnormal child can serve as an even greater source of emotional turbulence for the couple and/or family. To avoid feelings of shame and stigmatization, the patient may refrain from discussing spontaneous abortions, stillbirths or genetic disorder, thus giving the genetic counselor an inaccurate family and medical history.
Since the information presented during the genetic counseling session is technical and complex, a patientfs level of education will undoubtedly impact on how much detail the patient can absorb in one to two sessions. For patients with less than a high school education, the introduction of DNA technology and molecular biology may be quite difficult to understand in one counseling interaction.
Barriers on the part of the provider center derive from:
- a lack of knowledge of the unique ethnocultural characteristics of patients and their special needs
- stereotypic expectations of patients and their decisions
- a lack of awareness of the cultural values and responses within oneself
- a lack of understanding that behaviors can be intra- and interculturally specific
- provision of services as per the values of Western medicine
Barriers to genetic health services would then result in a decreased utilization of services, poor compliance with genetic counseling and specific and unelected birth of a child with a diagnosable birth and genetic disease.
3.Selection and training of a bilingual/bicultural genetic counseling assistant
The genetic assistant was of Chinese-American ethnocultural background and had experience in the health field, fluency and proficiency in the languages of the targeted group and thorough knowledge of community resources, agencies and existing networks.
The training program for the genetic assistant was divided into theoretical and practical components and after training, the genetic assistant become responsible for (PuZales-Morejon et al 1991):
- educating the lay community on medical genetics
- enhancing genetic service providersf understanding of particular Chinese attitudes towards health and healthier
- serving as a liaison between the community and genetic service provider
- establishing and articulating referral networks within the targeted community
- serving as a reliable and knowledgeable interpreter
- helping develop literature and educational materials that are culturally and linguistically relevant
4.Identification and assessment of Chinese cultural beliefs towards health, illness, disability, birth defects and fetal abnormalities.
The following were the beliefs identified as part of Chinese culture:
1. The first pregnancy is considered the most important and most susceptible to pregnancy loss or complications, therefore, patientfs are more likely to refuse invasive prenatal testing for first pregnancies.
2. There exists a belief of a natural harmony in the body (Yin and Yang) that should not be disturbed. Drawing body fluids, such as amniotic fluid and blood, disturbs the natural harmony and can gweakenh the individual.
3. Family unity and respect for the elders in the family is a tradition, therefore, decision making includes the extended family, especially the patientfs husband and in-laws.
4. Birth defects are believed to be a punishment to the family as a result of sins committed by ancestors or parents.
5. Birth defects are commonly believed to be caused by certain foods eaten during pregnancy, for example:
a. banana = asthma, miscarriage
b. crab = extra digits, hyperactivity
c. snail = protruding tongue
d. rabbit = seizures
e. mutton = seizures
f. snake = rough, scaly skin
g. foods with gcoldh qualities = green beans, seaweed, certain herbs, fruits (watermelon) - miscarriage.
6. Some common superstitions include:
a. Time of day, date, and year of birth may be associated with good fortune and prosperity or bad luck.
b. Using a pair of scissors during pregnancy should be avoided as this may cause the baby to be born with cleft lip and palate.
c. Moving to a new house should be avoided as the process of moving can cause a miscarriage.
d. Pregnant women should not attend funerals because this can cause children to be born with birth defects.
7. The word gtesth has the connotation of gexperimentalh and patients are adamant against being involved in any experimental procedures. Therefore, the word test should be avoided and, instead, gexamh may be a more appropriate and less frightening word to use.
To conclude, the outreach genetic counseling program to the Chinese community of New York City developed by the Division of Medical Genetics of Beth Israel Medical Center (Punales-Morejon, D. et al 1992) has been able to:
1. substantially increase utilization and accessibility of genetic counseling services by an particular immigrant group
2. enhance the quality of genetic counseling offered to this culturally diverse population by:
a. providing services in a familiar setting through the use of satellite clinics by a genetic team which includes a bilingual/bicultural genetic assistant
b. giving the patient linguistic and cultural support thus helping with the transition to new unfamiliar medical genetic practices while recognizing the value of traditional beliefs and customs
c. acknowledging and incorporating the value of the extended family in genetic counseling services and learning of the patients:
- affiliate ties with their family
- their socioeconomic status
- the geographic distance from their home to the service center
- the degree of association with their ethnic subculture
d. using simple and concise genetic terminology and visual aids which takes into account cultural and literacy levels
e. removing economic barriers through a fair billing system
f. educating health providers as to Chinese culture, values and attitudes towards healthcare and the lay community on medical genetics
g. maintaining sensitivity and respect toward the cultural values of the community and the individual
The experience of the project demonstrates that utilization of genetic counseling services and accessibility are increased significantly when ethnocultural obstacles are addressed appropriately, services are regionalized and economic barriers are minimized.
Jung, J.H. Traditional Chines Culture. In: Fisher NL (ed): Cultural and Ethnic Diversity. A Guide for Genetic Professionals. Johns Hopkins Press, Baltimore, 1996, pp 86-97.
Chan, S. Families with Asian Roots. In: Lynch, E.W. and Hanson, M.J. (eds): Developing Cross-Cultural Competence. P.H.Brookes, Baltimore, 1992, pp 181-258.
OfHare, W. P. and Felt, J.C. Asian Americans: Americafs Fastest Growing Minority Group. Population Reference Bureau, Washington, 1991.
Penchaszadeh, V. B., Punales-Morejon, D., Chin, E. Cultural factors in genetic counseling services to Chinese-Americans. Conference on Overcoming Cultural Barriers to Genetic Counseling. The university of Arizona, Tucson, AZ, April 19-22, 1990.
Punales-Morejon, D. Chin E., Riddle, L., Penchaszadeh, V.B. Genetic outreach assistants: Helping overcome barriers in the provision of genetic services. 118th Annual Meeting of the American Public Health Association, New York, September 30-October 4, 1990.
Punales-Morejon, D., Chin, E., Penchaszadeh, V.B.Designing a culturally genetic program. A 3 year experience with the Chinese community of New York City. 6th Congress of the World Federation of Public Health Associations. Atlanta, November 10-14, 1991.
Punales-Morejon, D., Fletcher, G., Hina, S., Penchaszadeh, V.B. Tapping thoughts: A multivariate survey of patientsf perceptions of and attitudes toward prenatal diagnosis and reproductive options. Third European Meeting on Psychosocial Aspects of Genetics. University of Nottingham, September 21-23, 1992.
U.S. Department of Commerce. Bureau of the Census. 1990 Census of Population and Housing. U.S. Government Printing Office, Washington.
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