Ethical issues in genetic counseling: A comparison of M.S. counselor and medical geneticist perspectives

New technologies available in the field of medical genetics have increased the importance of responsible ethical decision-making among genetic counselors. A 1985 national survey of M.D. and Ph.D. genetic counselors assessed ethical attitudes using case scenarios designed to simulate dilemmas faced in genetic counseling (Wertz and Fletcher, 1988b). The current study focuses on attitudes of M.S. genetic counselors using similar scenarios, allowing for effective comparisons. M.S. counselors were more willing than M.D. and Ph.D. counselors to maintain patient confidentiality when screening for Huntington's Disease and occupational diseases, and a greater number would agree to counsel patients pursuing prenatal testing for sex selection. A majority of M.S. counselors would disclose an XY karyotype to a phenotypically female patient. M.S. counselors reasoned that respect for patient autonomy and patient confidentiality justified their decisions in many cases. The importance of these principles is discussed and questioned.     

Psychological aspects of genetic counseling. VIII. Suffering and countertransference

Two common forms of countertransferential problems seen in genetic counseling, associative and projective, are described and illustrated. Both forms have the potential of reducing the quality of empathy counselors provide counselees. When counselors experience the same problems as the counselees they counsel it is virtually impossible to avoid facing countertransferential reactions which may not always promote the counselees' interests and/or redound to their benefit. Genetic counselors, like other personal counselors and psychotherapists, have a professional responsibility to be aware of, monitor, contain, and learn from their countertransferential experiences.     

Psychology of Religion: What One Needs to Know

This essay is an introduction to systematic nonsectarian psychology of religion—its nature and scope, and its history. Among major issues, the study of motivation for being religious and stages of religious development are discussed, as well as counseling and psychotherapy. I summarize current trends.     

Psychological Aspects of Genetic Counseling: XII. More on Counseling Skills

Three brief excerpts of genetic counseling sessions are analyzed to illustrate difficulties in applying counseling skills. Suggestions are advanced as to how genetic counselors might improve their competence in counseling practices and handle such issues as transference more effectively.     

A Simple, Unified Approach to Bayesian Risk Calculations

A simple, unified approach for calculating Bayesian risks is presented and illustrated with examples. Although new genetic tools have reduced the need for these risk calculations, situations still exist in which consultands need to know these kinds of risks (for example, when no direct test is available for a particular deleterious mutation, or when a consultand wants to know his/her risk before deciding whether to undergo a direct test). The Unified Approach presented here is straightforward and ensures calculating the correct risks. It can be applied to a wide variety of genetic counseling situations, including but not limited to: calculating recurrence or carrier risks for dominant and recessive diseases; incorporating false-positive and false-negative rates on genetic tests into risk calculations; and determining the probability that an isolated case in a family represents a new mutation. The method is based on basic principles of probability and likelihood theory but can be used without sophisticated knowledge of this theory. The method relies on two rules, the Rule of All Configurations and the Rule of Fundamental Probabilities, which are explained and illustrated. The Unified Approach does not represent new or original mathematics but should make it easier for users to calculate risks accurately. A warning is included that complex calculations should always be independently verified by another individual.     

Billing and Record-Keeping for Familial Cancer Risk Counseling: A National Survey

We surveyed 111 genetic counselors providing cancer risk counseling (CRC) in order to document their billing and record-keeping practices. Of the 75 respondents, billing was generally done under the supervising physician with a wide variation in charges. Follow-up telephone interviews with 28 counselors who charge patients revealed that billing was usually done using the CPT codes for consultations, and the ICD-9 diagnostic codes for cancer (if applicable), a medical complaint, or a family history of cancer code. Most counselors exclude some clinical information from the patient's medical record. In consultation notes, 81% of counselors document a discussion of genetic testing, but only 37% document the patient's actual testing decision, and only 19% document test results. In anticipation of increased referrals for CRC, data are needed on the components of a CRC visit, the amount of time required to provide CRC, patient outcomes measures, and charges and reimbursement. The feasibility and advisability of keeping results separate from the patient's medical record also needs to be addressed.     

Women's Understanding of Their Risk of Developing Breast/Ovarian Cancer Before and After Genetic Counseling

Many studies have reported that individuals frequently over- or underestimate their risk of developing cancer both before and after they attend genetic counseling for breast and/or ovarian cancer. Using a combination of interviews and written questionnaires, we investigated counselees' understanding of their risk of developing cancer before and after genetic counseling. We demonstrate that although 76% of the sample thought that their risk was elevated relative to women in general, only a small proportion (17%) were willing or able to provide a numerical estimate of their risk of developing cancer before they attended the clinic. Following the consultation, 43% indicated that their risk of developing cancer was lower than they had anticipated. Twenty-two percent described their risk in absolute rather than relative terms, i.e., that they would definitely (not) develop cancer in the future. The implications of these findings for further research are discussed.     

Acculturation in Women with Mental Retardation and Its Impact on Genetic Counseling

The provision of genetic counseling to women with mild mental retardation poses many challenges, some directly related to their developmental and cognitive disabilities. Traditional genetic counseling models, in which decision-making is largely based on the understanding of factual information, are particularly affected by the intellectual limitations which characterize this population. Equally important, however, are these women's attitudes, perceptions, and behaviors related to their involuntary inclusion into a highly stigmatized social group. Common themes among these women which surface in the genetic counseling setting include the denial of mental retardation, a hierarchical perception of their own and others' disabilities, and a strong motivation to conceive and parent a child. Such attitudes and behaviors may be symptomatic of acculturation, as these women struggle to take on accepted social roles while rejecting the stigma of intellectual disability. In contrast to factual information, the counselee's ability to discuss emotions and perceptions is not necessarily hampered by her intellectual limitations. A focus on the recognition and discussion of psychosocial issues provides a more meaningful approach than traditional genetic counseling models for facilitating informed reproductive decisions among women with mental retardation.     

Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer

In familial breast/ovarian cancer, the information that the proband is able to supply about other family members is of critical importance for genetic counseling. This frequently requires family communication. Forty-six women attending a cancer genetics clinic were interviewed as part of a longitudinal study. Nearly all reported affected maternal, rather than paternal relatives, which may indicate lack of awareness by women with paternal histories. There was also much more communication among female relatives. Mothers, where they were still alive, were key figures in supplying family information. Although the majority of the sample contacted at least one relative regarding counseling, most named a relative with whom they did not feel able to communicate on this subject. Probands balanced the perceived obligation of passing on information with that of not causing alarm. Communication, both obtaining and giving information, was impeded by adoption, divorce and remarriage, family rifts, and large age gaps between siblings.