Genetic Testing Considerations in Breast Cancer Patients

Genetic testing is now feasible for a growing number of cancers. Although the implications for unaffected relatives have been widely described, the impact of the tests on affected individuals are often not recognized. We present and discuss four cases that highlight some of the issues—for example, feelings of guilt and anxiety, intrafamilial conflict, and support needs—that may arise in testing affected individuals. We offer some suggestions to aid in the approach to such testing.     

Client Perceptions of the Impact of Genetic Counseling: An Exploratory Study

Twenty-eight former genetic counseling clients seen at a major Midwestern university were recruited to be interviewed about their genetic counseling experiences, including most and least helpful aspects, what they learned, how this information impacted their decision-making, and their perceptions of their genetic counselors' behaviors. Responses were inductively analyzed, and several themes were identified, including: Clients sought genetic counseling to obtain genetic-medical information; a majority accurately recalled this information; genetic counseling influenced decisions for about 50% of the sample; decision-making was affected by several extra-session factors; a majority experienced distress during the session; most perceived genetic counselor responses as nondirective and liked this approach; counselor behaviors regarded as directive involved discussion of pregnancy termination; participants disagreed about the need for and provision of genetic counselor support; most regarded the session as helpful and stated that they would seek genetic counseling again. Suggestions for addressing these issues in practice and research are given.     

Complex Genetic Disorders: Evaluating When Genetic Research Findings Are Applicable for Genetic Counseling Practice

Traditional genetic counseling processes and principles will be extended to a new realm—complex disorders. Although it may seem like a daunting task, understanding the methodologies used to study complex genetic disorders will enable genetic counselors to critically analyze research studies involving complex disorders. In this article, we explain newly evolving methodologies for genetic research, including case-control studies and transmission disequilibrium testing (TDT). Additionally, a framework is provided for evaluating original research findings and replication studies.     

BRCA1 Testing: Genetic Counseling Protocol Development and Counseling Issues

This article discusses the genetic counseling protocols which were developed and counseling issues that have arisen in the first 2 years of evaluating a large kindred with a BRCA1 mutation. The rationale for the development of the genetic counseling protocols and specific genetic counseling visual aids are presented and discussed. The protocols and counseling aids can serve as models for other programs offering cancer susceptibility testing. The observations of study counselors about study subject concerns and responses to genetic testing at the time of the pretest and posttest counseling sessions are presented.     

Letter to a genetic counselor

The author describes her personal experience terminating a pregnancy after receiving an abnormal amniocentesis result: While still waiting for the results, she and her husband attempted to deny the importance of the pregnancy, an approach which they subsequently regretted. When they received the abnormal result, they found themselves able to make necessary decisions quickly, despite being in shock. It then took some time before they realized what a major loss they had actually suffered. The painful aftermath included accepting emotional responsibility for their decision to abort, as well as explaining that difficult decision to their older children. Thoughts of a possible subsequent pregnancy could not be faced at once. Over time, the author found the support of friends and colleagues, and even of a support group, to be invaluable. All in all, the entire experience was more painful than she would have predicted, and she hopes that this account will prove helpful both to genetic counselors and to other patients who receive abnormal results from prenatal diagnosis. A list of suggested readings is appended.Rose Green is a pseudonym.     

An explication of the National Society of Genetic Counselors (NSGC) code of ethics

This article reviews the work carried out by the NSGC ad hoc Committee on Ethical Codes and Principles between 1986 and 1991 and serves as a guide for interpreting the NSGC Code of Ethics. The NSGC Code of Ethics is written from the ethic of care perspective. It is based on the responsibilities that arise from the four primary relationships genetic counselors experience in their work: genetic counselors and themselves, their clients, their colleagues, and society. The values selected for each relationship and the resultant guidelines are explained. The Code of Ethics became effective January 1, 1992.     

Attitudes toward genetic testing for cystic fibrosis among college students

The knowledge and attitudes of 25 college students toward clinical and genetic aspects of cystic fibrosis (CF) were assessed before and after an 80-minute presentation about the disease. The students were asked about their plans regarding genetic testing for cystic fibrosis prior to, and during future conceptions. While their knowledge about the disease increased significantly following the lecture, there were no significant changes in their attitudes.     

THE INTERPLAY BETWEEN SCIENCE AND THEOLOGY IN UNCOVERING THE MATRIX OF HUMAN MORALITY

Abstract. Theology and the life sciences are mutually dependent on one another in the task of understanding the origin and function of moral behavior. The life sciences investigate morality from the perspective of the historical and communal dimension of humanity and point to survival as the primary function of human behavior. A Christian ethic of self-sacrifice advances the preservation of the entire human and nonhuman creation and should not, therefore, be objected to by the life sciences. Religion, however, is more than a survival mechanism. It points to a preserving agency beyond humanity and prevents the life sciences from reducing life to its strictly biological side.     

Preconception Genetic Counseling: Three Years of Experience at a Community-Based Health Center

In the United States, access to genetic education and services is not equally available to all segments of the population, especially to women of minority backgrounds and low incomes. In response to this issue, the Preconception Genetic Health Education Program (PGHEP) was implemented in September of 1993 at the Woodlawn Maternal and Child Health Center in south side Chicago. The goal of this program is to provide access to genetic services to a previously underserved population. Women attending the family planning clinics are offered free, confidential preconception genetic screening and counseling on-site. As of January 1, 1997, 1300 women have participated in the program. The development and implementation of the PGHEP, client self-reports of family histories and beliefs, and implications for future delivery of genetic services are discussed.