TABLE 8-1 Global Genetic Counseling Training Programs | ||||||||||||||||||||||||||||||||||||||||||||||||
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TABLE 8-2 Leading Causes of Death—India, World, United States | ||||||||||||||||||||||||||||||||||||
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Hinduism and Sikhism: Genetic Counseling Aspects
Hinduism and Sikhism: Genetic Counseling Aspects
Elizabeth A. Gettig MS, CGC
Triptish Bhatia PhD
A case study: Years ago one of the authors [EG] provided prenatal diagnosis and genetic counseling to a couple living in the United States who had immigrated from Bangalore, India. Both members of the couple were 35 years of age and engineering professionals. An amniocentesis was performed which revealed a diagnosis of Trisomy 18. They elected termination of the pregnancy and cremation of the remains of the baby by the hospital. Several weeks later the couple re-contacted the center asking if ash from the cremation or any other material was available, as they wished to conduct a ceremony to commemorate the life of the baby at their Hindu temple. Due to mid-trimester development, little or no ash was available to the couple. The counselor did ask to speak to their priest to gather more information about the ceremony and determine if any alternatives could be found. After a very thoughtful discussion with the priest, the genetic counselor mentioned that the laboratory did have slides which had cells from the baby. There were extra slides available. The priest was asked if the slides could be used in the ceremony. The counselor delivered three slides to the priest who crushed them with a mortar and pestle to create a fine sand similar to ash. This material was used in the ceremony, which brought great comfort to the couple.
The case above illustrates how working with clergy in a culturally sensitive manner can provide support and comfort to families. Only by mutual exchange could a satisfactory resolution be made. To communicate effectively with other cultures, genetic care providers must pursue cultural competency. We review issues of Hinduism and Sikhism (in India and the United States) and offer aspects of the religion and culture that may assist in communication. Although there are significant differences between the Hindu and Sikh cultures and vast diversity within them, there are shared traditions: a belief in rebirth, a concept of karma (in which experiences in one life influence experiences in future lives), collective decision making, an emphasis on the value of purity, and a holistic view of the person that affirms the importance of family, culture, environment and the spiritual dimension of experience. When offering genetic testing and counseling it is important to keep the tenets of these religions in mind. The growing number of south Asians in the United States and the increase in genetic services in India demonstrate the need for trans-cultural understanding. Many who immigrate from India continue with traditional religious practices. Some practices may be westernized a bit but the roots remain in India. Therefore we address traditional Indian values in this chapter.
Genetic testing programs and genetic training programs have emerged worldwide (Table 1). These services and programs reflect varying approaches to the patient and to the student in training. As India develops more genetic resources we have sought to contrast our current similarities and differences in serving families with genetic conditions. In the Hindu and Sikh traditions, there is no great distinction between culture and religion, and medical decisions are grounded in both religious beliefs and cultural values. We focus on Sikhs and Hindus in this paper, but recognize the vast number of cultures and languages in India and among those who have emigrated to the United States and other parts of the world.
Cultural self-awareness is the key because it enables healthcare providers to recognize that as cultural beings, they may hold attitudes and beliefs that can detrimentally influence their perceptions of and interactions with individuals who are ethnically, culturally, and racially different from themselves. A threefold approach of developing awareness and knowledge of one’s own culture, developing awareness of the client’s culture, and learning specific skills to minimize the impact of one’s own biases and prejudices toward the multicultural interaction aids in developing ethno-cultural self awareness (Sue and Sue 1999).
General Facts: India and the United States
To undertake our task of contrasting India and the United States some basic facts are needed. India is one of the oldest civilizations on the planet, dating back over 5,000 years. The United States has a relatively short history. India’s first major civilization flourished for a thousand years beginning around 2500 BCE. By the nineteenth century, Britain had assumed political control of virtually all Indian lands. Nonviolent resistance to British colonialism led by Mohandas Gandhi brought independence in 1947. The subcontinent was divided into the secular state of India and the smaller Muslim state of Pakistan. A third war between the two countries in 1971 resulted in East Pakistan becoming the separate nation of Bangladesh. Despite impressive gains in economic investment and output, India faces pressing problems such as the ongoing dispute with Pakistan over Kashmir, massive overpopulation, environmental degradation, extensive poverty, and ethnic and religious strife (CIA 2006).
India has over a billion citizens, a third of whom are less than 15 years of age, compared to a total population of less than 300 million in the United States with 20% of the U.S. population less than 15 years of age. (Indian Ministry of Home Affairs 2001). The land mass of India is slightly more than one-third the size of the United States. The growing Indian population is straining its natural resources. The life expectancy is 64 years, contrasted to about 78 years in the United States. The population growth rate in India is 1.4% and .92% in the United States. The infant morality rate in India is 5.6% with the rate in the United States being 0.65 % (CIA 2006).
India has a diverse set of spoken languages among different groups of people. At least 30 different languages and around 2,000 dialects have been identified. The Constitution of India has stipulated Hindi and English to be the two official languages of communication for the national government. Additionally, it contains a list of 22 scheduled languages. (Wikipedia n.d.).
Internationally literacy is defined as those who can read and write after age 15. Using this definition the Indian literacy rate is 59.5% (70.2% males; 48.3% females) compared to the U.S. rate of 97% (equal between the sexes). There are 147 million people in the U.S. workforce and 482 million in the Indian workforce.
The leading causes of death are shown in Table 8-2 and are contrasted with the United States and the World Health Organization (WHO) (NCHS 2005; Infoplease 2002; WHO 2000). Being a developing country, India is still fighting with its overload of infectious diseases. HIV/AIDS in India is at a critical stage. Diarrheal diseases such as cholera and dysentery caused by poor sanitation and unsafe water claim thousands of lives annually in addition to loss of life from tuberculosis and malaria. Relevancy of genetic health conditions compared to those infectious in nature has not emerged as a pressing health issue. The priorities are different as vast numbers of people still live in poverty, at least 25% of the population. This does not mean that genetic diseases are not present in India, but genetics takes a different place in terms of importance in health care (Verma 2000). There is scarcity of genetic awareness among the public and health provider community with the possible exception of beta-thalassemia and other hemoglobinopathy programs (Figure 8-1). The general public may not know about these diseases and therefore are unable to recognize and understand their symptoms and origin, though they observe the familial nature of conditions. The public may feel helpless and may not seek help to understand these conditions. They are referred by their family physicians for genetic testing and special services that may be quite limited (Verma 2005).
