Genetic Counseling: Grief, Bereavement, and Prenatal Decisions

Introduction to Genetic Screening and Counseling

The acceptance of genetic screening and counseling among all communities is increasing, as is the accessibility of this form of prenatal care. It was once mostly available for common single-gene disorders associated with specific demographic groups, such as the prevalence of Down syndrome among the children of older mothers, or Tay-Sachs disease among Eastern European Jews. Genetic testing examines genetic markers or DNA patterns that can be traced within a family to identify individuals at risk for a disease, even when the exact gene causing that disease has not yet been identified in medical literature. "Genetic markers are primarily studied in the research setting" using population groups of families that have many affected members of a particular disorder, while genetic screening and counseling may have a wider scope, as its purpose is to help families make proactive decisions about a pregnancy — ranging from one that may produce a child with mild but treatable difficulties to one involving potentially fatal or life-threatening disorders (Beery & Schooner, 2004, p. 1).

Additionally, "clinicians in all specialties are confronted with patients who have an inherited susceptibility to diseases that were previously believed to be solely caused by environmental and sporadic factors," such as diabetes and heart disease. As the role of genetics in a potential child's future health becomes better understood, the need for counseling and support will grow correspondingly, helping parents make proactive and informed decisions that are right for their families (Beery & Schooner, 2004, p. 1). For example, "the prevalence of obesity and Type 2 diabetes in certain populations" is now attributed to a genotype common to hunter-gatherer populations that have not undergone much genetic intermingling, and was "selected for by frequent famines throughout those populations' prehistory." People who express the thrifty genotype are presumably predisposed to accumulate fat reserves in times of plenty for later use during famine. In today's environment of constant food availability, people with that once-useful genotype are prone to metabolic problems such as obesity and diabetes, which are common in groups such as Australian Aborigines, Native Americans, and Polynesians, and who may need to modify their diets for health reasons (Reebs, 2006). Although these disorders are treatable, other potentially debilitating genetic conditions are not. Regardless, the counselor must help the client understand how a child's disease will affect family life, the child's rate of survival, and the need for supportive counseling before and after any decision is made to terminate a pregnancy.

As genetic screening becomes more common, so will the need to support persons who are distressed by its results and revelations. Grief and bereavement counseling is a skill that any clinician involved in pregnancy must acquire to some degree — regardless of background — if that clinician is providing advice and information about interpreting and acting on a genetic screening. Although prenatal genetic testing through amniocentesis is often performed, high-level prenatal and genetic counseling is frequently lacking, "leaving women and their partners ill prepared for an unexpected finding" (Biesecker, 2001, p. 1). One common cultural trait shared across most demographic groups is the hope that nothing will be found to be wrong, and a reluctance to plan for the worst when expecting a new life.

References

Baker, D., Schuette, J., & Uhlmann, W. (Eds.). (1998). A guide to genetic counseling.

Beery, T. A., & Schooner, K. A. (2004, November). Family history: The first genetic screen. Nurse Practitioner. Retrieved June 23, 2007, from http://findarticles.com/p/articles/mi_qa3958/is_200411/ai_n9469874/pg_5

Biesecker, B. (2001, February 24). Prenatal diagnoses of sex chromosome conditions: Parents need more than just accurate information. British Medical Journal. Retrieved June 23, 2007, from http://findarticles.com/p/articles/mi_m0999/is_7284_322/ai_71820689/pg_3

Murray, R. F. (1976). Psychosocial aspects of genetic counseling. Social Work in Health Care, 2(1), 13–23.

Reebs, S. (2006). Feast or famine. Natural History. Retrieved June 24, 2007, from http://findarticles.com/p/articles/mi_m1134/is_8_115/ai_n16807311

Rosenfeld, J. A. (1992, January). Emotional responses to therapeutic abortion. American Family Physician. Retrieved June 23, 2007, from http://findarticles.com/p/articles/mi_m3225/is_n1_v45/ai_11899635/pg_3