Knowledge of Breast Cancer Genetics Among Breast Cancer Patients and First-Degree Relatives of Affected Individuals

The cloning of BRCA1, a susceptibility gene for inherited breast cancer, has made genetic screening possible for individuals and families whose medical histories are suggestive of an inherited predisposition to breast cancer. To date, few systematic attempts have been made to determine the level of knowledge about breast cancer genetics among women who are likely to seek BRCA1 screening when it becomes widely available. The present study attempted to assess the general knowledge about BRCA1 mutations in two groups: (1) first-degree relatives (FDRs) of breast cancer patients; and (2) women with a previous diagnosis of breast cancer. A self-administered, thirty-item questionnaire was developed through a pilot study. Ten of the items were objective, factual questions about breast cancer genetics. Responses to these questions were used to generate an overall knowledge score for each respondent. The study population was moderately knowledgeable about breast cancer genetics, with an average score of 5.35 out of 10. Counselors should not underestimate the importance of evaluating each counselee's existing knowledge about breast cancer, which can affect the provision and reception of genetic information. In particular, specific areas of knowledge that may be confusing or misunderstood were identified and these topics are discussed in detail.     

The responsibility of engineers, appropriate technology, and lesser developed nations

Projects importing technology to lesser developed nations may raise five important concerns: famine resulting from substitution of cash crops for subsistence crops, the use of products banned in the United States but permitted overseas, the use of products safe in the U.S. but unsafe under local conditions, ecological consequences of technological change, and cultural disruption caused by displacing traditional ways of life. Are engineers responsible for the foreseeable hunger, environmental degradation, cultural disruption, and illness that results from the project? Are engineers guilty of paternalism if they refuse to accept the project for that reason? Criteria are given to help engineers assess the extent of their responsibility when working in lesser developed nations.     

Resistance and adherence to the norms of genetic counseling

Genetic counseling for women of advanced maternal age who are considering prenatal testing continues to be based on a principle of nondirectiveness. We interviewed 11 genetic counseling students and four counselors about how they experience and manage, in practice, the tensions between the ideology of nondirectiveness and the acknowledged reality that one can never be truly nondirective. We found that our respondents creatively resolve this tension—simultaneously resisting and adhering to the values of nondirectiveness and information-giving—in individual and situation-specific ways. This resolution is facilitated by the extent to which information given to counselees is fluid, mobile and context-dependent, but these very features of information also have critical implications for both the norms and the practice of genetic counseling.     

An historical preface to engineering ethics

This article attempts to distinguish between science and technology, on the one hand, and engineering, on the other, offering a brief introduction to engineering values and engineering ethics. The method is (roughly) a philosophical examination of history. Engineering turns out to be a relatively recent enterprise, barely three hundred years old, to have distinctive commitments both technical and moral, and to have changed a good deal both technically and morally during that period. What motivates the paper is the belief that a too-easy equation of engineering with technology tends to obscure the special contribution of engineers to technology and to their own professional standards and so, to obscure as well both the origin and content of engineering ethics.     

Cultural competency in genetic counseling

Incorporating a cross-cultural curriculum into genetic counseling training programs demonstrates a professional conviction of genetic counselors that cultural issues are important in genetic counseling. Funded by the Special Projects Fund in 1993 from the National Society of Genetic Counselors and the Kitson Fund from the Department of Social, Organizational, and Counseling Psychology, Teachers College, Columbia University, theHandbook of Cross-Cultural Genetic Counseling was developed to provide genetic counseling programs a curriculum to teach cross-cultural genetic counseling. The theoretical rationale for the development of a cultural curriculum is presented. By expanding cultural knowledge, developing an awareness of oneself and others, and increasing the repertoire of culturally relevant counseling skills within a socio-political context, genetic counselors will be able to better serve all clients seeking genetic counseling.     

Practice-based competencies for accreditation of and training in graduate programs in genetic counseling

In January 1996, the American Board of Genetic Counseling (ABGC) adopted 27 practice-based competencies as a standard for assessing the training of graduate students in genetic counseling. These competencies were identified and refined through a collective, narrative process that took place from January through November 1994, and included directors of graduate programs in genetic counseling, ABGC board members and expert consultants. These competencies now form the basis of the document Requirements for Graduate Programs in Genetic Counseling Seeking Accreditation by the American Board of Genetic Counseling (American Board of Genetic Counseling, 1996). The competencies are organized into four domains and are presented and discussed in this article.The Consortium includes Directors of established graduate programs in genetic counseling and members of the ABGC Board of Directors who participated in the Consensus Development Conference held in January, 1994: Diane Baker (University of Michigan/ABGC); Bonnie Baty (ABGC); Joan Burns (University of Wisconsin); Debra Collins (ABGC); Virginia Corson (ABGC); Beth Fine (Northwestern University/ABGC); Elizabeth Gettig (University of Pittsburgh); Verle Headings (Howard University); Jacqueline Hecht (University of Texas); Carl Huether (University of Cincinnati); Bonnie LeRoy (University of Minnesota); Joan Marks (Sarah Lawrence College); Anne Matthews (University of Colorado); Roberta Palmour (McGill University); Lorna Phelps (Medical College of Virginia); Kimberly Quaid (Indiana University); Joan Scott (ABGC); Ann Smith (ABGC); Helen Travers (ABGC); Judith Tsipis (Brandeis University); Ann Walker (University of California-Irvine/ABGC); Jon Weil (University of California-Berkeley); S. Robert Young (University of South Carolina); Randi Zinberg (Mount Sinai School of Medicine, New York).     

Counseling and screening for cystic fibrosis in patients with congenital bilateral absence of the vas deferens: Patient perceptions

Congenital bilateral absence of the vas deferens (CBAVD) occurs in approximately 1.3% of infertile males and is thought to be, in most cases, a primarily genital form of cystic fibrosis (CF). Fourteen males with CBAVD considering microsurgical sperm aspiration from the epididymis (MESA) and in vitro fertilization were seen for genetic counseling and screening for CF. To retrospectively evaluate these patients' perceptions of the counseling and screening information, we conducted structured telephone interviews to assess their recall of information about CF and its impact on their health concerns and reproductive plans. We found that, as the health implications of CF are abstract and not as important to patients as the diagnosis of CBAVD itself, patients tend to view their CF status primarily in terms of their reproductive potential. Retrospective analysis afforded us an opportunity to identify the psychosocial issues of most concern to this unique patient population.     

Genetic counseling for pregnant adolescents

The genetic counseling literature has a paucity of information on how to provide genetic counseling services to adolescents, especially those who are pregnant. The adolescent population should be viewed as a separate culture, complete with their own beliefs and viewpoints, which are dependent upon the developmental growth tasks of puberty. The completion of these tasks is complicated by pregnancy, which has its own set of developmental goals. The adolescent struggle with developmental goals interferes with the ability to identify consequences, predict future outcomes, and communicate self-revealing statements or decisions effectively. Instead, the adolescent has an egocentric frame of reference and seeks peer approval. The genetic counseling dilemmas presented by pregnant adolescents are illustrated through two case reports. A model based on our own experience and a literature review for successful counseling of adolescents is presented, and utilizes the foundation of trust, patience, and nonjudgmental behavior. Techniques that address the adolescent's concern for autonomy and peer approval are important, and can be achieved through nonthreatening, open-ended questions that promote self-expression. Incorporation of these techniques in genetic counseling and in graduate training will enhance genetic counseling services to the adolescent population.     

A case study of conflicting interests: Flemish engineers involved in environmental impact assessment

This article reports of the activities of the working group, Ethics & Engineers, of the Royal Flemish Society of Engineers. More particularly, the ethical problems that engineers face in the preparation of an environmental report are illuminated. Irrespective to which party the engineer belongs, he or she is confronted with the difficult weighting of his or her personal interest, the interests of private companies and last but not least the common good. It is argued that the implementation of a code of ethics and the introduction of courses on engineering ethics into the education of engineers would strengthen the engineer in the fulfilment of his vocation. Dirk Holemans is a bio-engineer preparing a doctoral thesis on the social responsibility of engineers, Herman Lodewyckx teaches ethics and has research interests in professional and applied ethics.