A Systemic Approach to Fetal Loss Following Genetic Testing

Advances in genetic technology challenge couples to make complex life and death decisions about their fetus that have far-reaching practical and emotional consequences. When genetic defects lead to fetal loss, whether by miscarriage, elective interruption, or still birth, it can be a devastating experience with ripple effects on couple and family development. This paper presents a systemic approach to coping and adaptation to fetal loss in the wake of genetic testing. Clinical vignettes illustrate common experiences and present interventions designed to help the individual grieving partners as well as the marriage. thereby strengthening the family fabric at a vulnerable transitional stage.     

Qualitative Cancer Genetic Counseling Research, Part II: Findings from a Exploratory Ethnographic Study in a Cancer Clinic

This is a report of the preliminary findings of a brief exploratory ethnographic study in a cancer diagnosis and treatment clinic. The main research purpose was to explore the meaning of cancer and cancer treatment to patients themselves and to their relatives and close friends. The methods are described in detail in a paper focusing on the experiences of being a novice ethnographer (Peters et al. (2001) J Genet Counsel 10(2):133–150.). The preliminary results of this exploratory fieldwork indicate that the experience of attending a cancer treatment clinic for evaluation and/or treatment is a complex social, emotional as well as medical process for patients and families. Themes with relevance to genetic counselors that emerged from this early observation period included ideas about causes of cancer, the complex nature of families and kinship, coping and support, use of food, and healing. These initial findings have implications for genetic counseling practice and hopefully will stimulate more qualitative social and behavioral research in cancer genetic counseling.     

Genetic Influence Helps Explain Variation in Human Fertility: Evidence From Recent Behavioral and Molecular Genetic Studies

To search for genetic influence on human fertility differentials appears inconsistent with past empirical research and prior interpretations of Fisher's fundamental theorem of natural selection. We discuss Fisher's theorem and give reasons why genetic influences may indeed account for individual differences in human fertility. We review recent empirical studies showing genetic influence on variance in fertility outcomes and precursors to fertility. Further, some of the genetic variance underlying fertility outcomes overlaps with that underlying fertility precursors. Findings from different cultures, different times, different levels of data, and both behavioral and molecular genetic designs lead to the same conclusion: Fertility differentials are genetically influenced, and at least part of the influence derives from behavioral precursors that are under volitional control, which are themselves genetically mediated.     

Agonistic behavior between wild and genetically sterile male Norway rats (rattus norvegicus)

Genetically sterile male Norway rats, Rattus norvegicus, were tested in the laboratory to determine both 1) behavioral characteristics, and 2) the ability of sterile males to compete aggressively and sexually with wild Norway rat males. Sterile males were larger in weight, more frequently dominant, won as many fighting encounters, were as aggressive as wild males, and mounted females more frequently. Behavioral activities were similar for both strains when compared under laboratory conditions with no apparent abnormal behavior exhibited by the sterile males. Use of sterile males in biological control programs is discussed.     

THE HUMAN BRAIN AND HUMAN DESTINY: A PATTERN FOR OLD BRAIN EMPATHY WITH THE EMERGENCE OF MIND

Abstract. The human brain combines empathy and imagination via the old brain which sets our destiny in the evolutionary scheme of things. This new understanding of cognition is an emergent phenomenon—basically an expressive ordering of reality as part of "a single natural system." The holographic and subsymbolic paradigms suggest that we live in a contextual universe, one which we create and yet one in which we are required to adapt. The inadequacy of the new brain—specially the left hemisphere's rational view of destiny—is replaced by a view of a new relatedness in reality in which human destiny comes from and depends upon the mutual interchange between the new brain (cultural knowledge) and the old brain (genetic wisdom) for the survival of what is significant to the whole systemic context in which we live.     

Germ-line gene therapy and the clinical ethos of medical genetics

Although the ability to perform gene therapy in human germ-line cells is still hypothetical, the rate of progress in molecular and cell biology suggests that it will only be a matter of time before reliable clinical techniques will be within reach. Three sets of arguments are commonly advanced against developing those techniques, respectively pointing to the clinical risks, social dangers and better alternatives. In this paper we analyze those arguments from the perspective of the client-centered ethos that traditionally governs practice in medical genetics. This perspective clarifies the merits of these arguments for geneticists, and suggests useful new directions for the professional discussion of germ-line gene therapy. It suggests, for example, that the much discussed prospect of germ-line therapy in human pre-embryos may always be more problematic for medical genetics than adult germ-line interventions, even though the latter faces greater technical difficulties.     

An educational program to overcome language and cultural barriers to genetic services

Providing genetic services to families who do not speak English and whose cultures are quite diverse presents a unique challenge to genetic specialists. One approach that is being employed successfully is the use of specially trained genetic assistants to provide outreach, case finding, referral, support, interpretation, advocacy, and follow-up counseling. A basic genetic assistant training program for five bicultural/bilingual Southeast Asian case managers is described. The course syllabus can be used to train health workers who represent a variety of cultures and languages.     

Attitudes toward maternal serum screening in Chinese women with positive results

Maternal serum screening for fetal Down syndrome has been integrated into routine antenatal care in most clinics in Taiwan. We examined the attitudes toward serum screening and the possible implications in women with positive results. From January to July 1995, 276 women were referred to the Genetic Counseling Clinic, Mackay Memorial Hospital for amniocentesis because of positive screening results, and 214 participated in this study. All women opted for amniocentesis after genetic counseling. Over 40% stated that they made decisions independently after being informed of the serum screening. Need for certainty was the most frequently mentioned reason. Two-thirds believed that serum screening could provide a diagnosis. Almost all women would apply for maternal serum screening for future pregnancies. This study demonstrated that Chinese women need more counseling and autonomy regarding maternal serum screening.     

Genetic Counseling Practices in Germany: A Comparison Between East German and West German Geneticists

As part of an international study of ethics and genetics, we present a comparison between survey responses of 43 East German and 212 West German geneticists to anonymous questionnaires. Both groups indicated that the experience of the Third Reich has impacted the genetics profession in Germany today. East German geneticists reported more directive counseling practices after prenatal diagnosis for 10 of 26 conditions than those from West Germany. When asked to give their personal opinions about pregnancy termination, East Germans were more accepting of abortion than their West German colleagues for 7 of 24 fetal indications. In addition, there were significant differences between the two sample groups for 8 questions on the perception of disability and society. Discussions with German geneticists suggest that, while both groups were affected by Germany's experience of Nazism, different abortion laws, political systems, and ideas about the doctor-patient relationship in former East and West Germany may account for discrepancies in reported genetic counseling practices and in attitudes toward abortion and disability.     

Psychological Aspects of Genetic Counseling. X. Advanced Counseling Techniques

Four procedures commonly used by experienced counselors are described: simple interview formulations, helping clients think through their problems, reframing, and role playing. Each procedure is illustrated by examples. Among other things, the goal of these procedures is to promote the autonomy and self-directedness of clients and thus are particularly valuable in circumstances requiring a nondirective stance. The need is underscored for a more active counseling stance appropriate to the psychological and problem-solving needs of genetic counselees.