Genetic Counseling Practice in Next Generation Sequencing Research: Implications for the Ethical Oversight of the Informed Consent Process

The potential for next generation sequencing research (NGS) to generate individual genetic results could have implications for the informed consent process and the provision of genetic counseling. We undertook a content analysis of informed consent templates and guidelines produced by Canadian institutional review boards, purposively sampling documents used by researchers to obtain consent from participants in genetics studies. Our goal was to examine the extent to which the informed consent documents addressed genetic counseling and the return of individual genetic results. Our analysis reveals that the majority of informed consent documents did not mention genetic counseling while several did not mention the return of results. We found differences in the ways in which documents addressed availability of counseling, eligibility criteria for referral to a genetic counselor, genetic counselor involvement, provision of services to family members of participants and incidental findings. From an ethical standpoint, consent documents should provide appropriate information so that participants may make an informed decision about their participation in research. The need to ensure adequate counseling for study populations in an NGS research context will necessarily involve adapting values that underlie care in genetic counseling practice. If the interests of research participants are to be truly promoted, the drafting and review of informed consent documents should give proper due to genetic counseling.     

Attitudes Toward Counselors and Counseling Processes: A Comparison of Chinese and American Graduate Students

Graduate students socialized in separate cultural settings, Taiwan and the United States, but studying at the same large university were surveyed about their (a) preferences for counselor's characteristics, (b) images of a counselor, and (c) attitudes toward counseling and counseling services. Results show that Chinese and American students have different preferences for and images of a counselor. Although both groups have positive attitudes toward seeking counseling, they know very little about the counseling resources and locations available. The groups also differ in their expectations of the counseling process. Some sex differences were indicated, but no clear pattern emerged.     

Autocoun: A Computer-Based Automated Counseling Simulation System

This paper describes the development and initial testing of a computer-based counseling system which attempted to simulate certain counseling behavior of one counselor. Forty junior high school students experienced counseling (educational planning) with the system, and with either the counselor after whom the system was modeled (N = 20) or another counselor (N = 20). Subjects interacted with a time-sharing computer using TWX input. The basic objective was to determine the similarity of outcomes between the system, model counselor, and second counselor. Criteria included similarity of pupil appraisal statements and course selections. The machine system agreed with both human counselors on approximately 75 per cent of the appraisal statements and about 65 per cent of the course selections. Some data regarding pupil attitudes toward the system are also reported.     

Counseling Clients Who Self‐Injure: Ethical Considerations

This article provides an overview of ethical considerations related to counseling clients who engage in self‐injurious behaviors. Ethical issues concerning client welfare, counselor competence, countertransference, referral and consultation, informed consent, and duty to protect are discussed in relation to the American Counseling Association's (1995) Code of Ethics and Standards of Practice. Implications and recommendations for counselors who work with clients who self‐injure are provided.     

Routine screening: informed consent, stigma and the waning of HIV exceptionalism

The Centers for Disease Control and Prevention (CDC) recently recommended that HIV screening should become routine for all adults in the United States. Implicit in the CDC proposal is the notion that pre-test counseling would be more limited than at present, and that written informed consent to screening would no longer be required. If widely implemented, routine testing would mark a tremendous shift in the US HIV screening strategy. There are a number of considerations used to determine what screening tests should be routine, and HIV fits the bill in almost every regard. Yet the stigma associated with HIV infection remains, making the CDC's recommendation highly controversial. Will minimizing requirements for pre-test counseling and special written informed consent lead to unexpected or unwanted HIV testing, or do these stringent counseling and consent requirements needlessly scare people away? Will widespread and routine testing be associated with declining stigmatization, or will it drive some patients away from seeking desperately needed health care? These are high stakes questions, and we're about to find out the answers.     

The Relationship Between Attitudes Toward Persons Who Are Gay and Persons With AIDS,and HIV and AIDS Knowledge

A total of 86 counseling students were assessed on their attitudes toward persons who are gay, attitudes toward persons with AIDS (Acquired Immune Deficiency Syndrome), and level of HIV (human immunodeficiency virus) and AIDS knowledge. Demographic data consisted of sex, age, and HIV- and AIDS-related training. Results indicated that the attitudinal and knowledge variables were correlated so that positive attitudes toward both groups corresponded with high levels of knowledge. There were no significant differences among these variables on the demographic factors. Implications of these results are discussed, with special emphasis placed on counselor education.     

Commentary on “Life as a Pregnant Genetic Counselor”

The genetic counseling role is complex. There are frequently challenges raised for the genetic counselor both personally with the client and through factors external to the genetic counselor such as the clinical setting. The pregnant genetic counselor working in a prenantal diagnosis center may be confronted by her own countertransference towards the client or by the client’s tranference. The processes of transference and countrtransference need to be clearly understood, identified and dealt with in a sensitive self aware manner to facilitate the role of communicating empathically and giving genetic information to facilitate informed client decision making. Regular professional supervision and debriefing for the genetic counselor are essential to develop professional boundaries and to develop self awareness.     

Coping attitudes, sources, and practices among Black and Latino college students

We investigated 130 Black and Latino college students regarding their concerns, attitudes toward professional counseling, sources of support, and coping activities. We found that the Black and Latino cultural emphasis on interdependence influenced attitudes toward using professional resources such as a counselor. We also found a significant two-way interaction between gender and race for attitudes toward professional counseling: Black males had less favorable attitudes in comparison to Black females, while Latino males had more favorable attitudes than did Latino females. Both Black and Latino college students had favorable attitudes toward informal support networks. Differences between Black and Latino college students were found for reported concerns and coping sources. Implications for counseling theory, practice, and research are discussed.     

Effects of Involving Conduct Problem Adolescents in the Setting of Counseling Goals

Effects of involving conduct problem adolescents in the setting of individual counseling goals were examined. Four levels of goal setting involvement were copmared with high school pupils referred for behavioral counseling in an urban public high school. The four levels were: Level 1-a pupil was directly invovled with a counselor in the goal setting process. Level 2-a pupil was informed that goals were being set by a counselor but pupil did not participate in the process. Level 3-goals were set by a counselor and pupil was neither informed nor involved. Level 4-no explicit counseling goal was set. Three school counselors employed a different level of goal setting for individual behavioral counseling with a different set of pupils during each quarter of the school year. Direct involvement of pupils in goal setting (Level 1) and knowledge that goals were being set for them (Level 2) led to greater amounts of goal attainment than was the case when pupils were not informed of goals (level 3) or when no explicit goal was set (Level 4). Direct involvement in goal setting was associated with highest degrees of pupil satisfaction with counseling. Results are discussed within the context of an increased concern among public school educators for development of effective means to assist the high school pupil with conduct problems. Directions for additional investigations are briefly noted.     

Noninvasive Prenatal Testing/Noninvasive Prenatal Diagnosis: the Position of the National Society of Genetic Counselors

The 1997 discovery of free fetal DNA in maternal plasma launched clinical researchers’ efforts to establish a reliable method for non-invasive prenatal testing for fetal genetic conditions. Various methods, including, but not limited to, massively parallel sequencing (MPS) and selective analysis of cell-free fetal DNA in maternal plasma, have recently been developed as highly sensitive and specific noninvasive screening tools for common fetal chromosome aneuploidies. Incorporating these new noninvasive technologies into clinical practice will impact the current prenatal screening paradigm for fetal aneuploidy, in which genetic counseling plays an integral role. The National Society of Genetic Counselors (NSGC) currently supports Noninvasive Prenatal Testing/Noninvasive Prenatal Diagnosis (NIPT/NIPD) as an option for patients whose pregnancies are considered to be at an increased risk for certain chromosome abnormalities. NSGC urges that NIPT/NIPD only be offered in the context of informed consent, education, and counseling by a qualified provider, such as a certified genetic counselor. Patients whose NIPT/NIPD results are abnormal, or who have other factors suggestive of a chromosome abnormality, should receive genetic counseling and be given the option of standard confirmatory diagnostic testing.     

心理咨询和治疗的知情同意原则及其影响因素

随着心理咨询和治疗的发展,患者的知情同意成为临床心理学实践的一个基本伦理观念和原则。首先提出心理咨询和治疗实践中的知情同意问题,介绍心理咨询和治疗知情同意的要素、过程、内容、意义和影响因素,并附心理咨询和治疗提供给患者的知情同意问卷,旨在引起从业者的注意和重视,并在临床实践中自觉地遵守。     

THE INCREASING SIGNIFICANCE OF EMPLOYMENT COUNSELING

With changes in the world of work and with increased use of employment services, employment counseling is taking on added significance. The transformation of work realities and attitudes toward work are causing problems that the employment counselor must confront. At the same time the once simple world of work has become increasingly complex. This complexity places additional responsibility on the counselor's shoulders as greater demands are made for his services. Consequently, the employment counselor faces many challenges in offering a unique service.     

Inclusion of Religious Behaviors and Attitudes in Counseling: Expectations of Conservative Christians

In this study of 118 religiously conservative Christians' expectations of counseling, participants were randomly assigned to 1 of 2 treatment conditions: a Christian counselor or a counselor whose religious beliefs were unknown. Participants rated their expectations for the counselor's attitude toward their religious beliefs and use of religious behaviors in counseling using the Behavior and Attitude Expectancies scale (C. Belaire & J. S. Young, 2002). Participants also rated their general expectations for counseling using the Expectations About Counseling: Brief Form (H. E. A. Tinsley, 1985). Results showed that participants expected both a Christian counselor and a counselor whose religious beliefs were unknown to be respectful and accepting of conservative Christian religious beliefs and values and to include multiple religious behaviors in counseling sessions. Participants had overall positive expectations of the counseling process.     

Parkinson’s Disease: Patients’ Knowledge,Attitudes, and Interest in Genetic Counseling

The objective of this study was to assess the genetics knowledge of patients with Parkinson’s disease (PD), and to explore their attitudes on genetic testing and interest in genetic counseling. We surveyed 158 patients from the University of Maryland Parkinson’s Disease and Movement Disorders Center. Patients averaged a score of 63% on general genetics knowledge and 73% on PD genetics knowledge. Participants had an overall positive attitude toward genetic testing: 80% believed that the use of genetic tests among people should be promoted, and 83% would undertake genetic test for PD if it was available. Patients reported a high interest to discuss the benefits, risks, and impacts of genetic testing for PD (mean sum score?=?26, range?=?9–35), and 43% patients expressed interest in meeting with a genetic counselor. Multivariate regression analysis showed that patients who had more positive attitudes toward genetic testing for PD were more interested in meeting with a genetic counselor (β?=?0.6, p?<?0.001). This study is the first to demonstrate an interest in genetic counseling among patients with PD. Our findings demonstrate a new niche for genetic counselors to support patients in clarifying gaps or misconceptions in knowledge about PD genetics as well as the possible risks, benefits, and limitations of genetic testing.     

White Racial Identity Attitudes and the Ego Defense Mechanisms Used by White Counselor Trainees in Racially Provocative Counseling Situations

This exploratory study examined the relationship between racial identity attitudes and the use of ego defense mechanisms by White counselor trainees during cross‐racial counseling and supervision dyads. The sample consisted of 145 White counselor trainees enrolled in both master's and doctoral programs at 2 small private universities located in the northeastern United States. Results indicated that White counselor trainees at less mature statuses of racial identity attitudes relied on more primitive ego defenses to manage the anxiety experienced during racially provocative counseling and supervision dyads. Implications for counseling and counselor training are discussed in the context of the study's findings.     

PPS director: administrator or counselor educator?

What is the primary role of the director of pupil personnel services? Is he a general administrator or a counselor educator? The author of this article feels that there is a great need for more directors who are oriented toward counselor education, and he focuses on three areas in which this type of director can have a great impact on school counseling.     

The counselor: who? what?

The author examines the criticisms of counselors which center on such factors as age, sex, race, and elitism. Areas of confusion regarding the functions of the counselor are related to the teacher-counselor issue, the professional functions of the counselor, and the basic purpose of counseling. The counselor is seen primarily as doing psychological counseling with individuals and groups, rather than teaching or advising.     

“Not Tied Up Neatly with a Bow”: Professionals’ Challenging Cases in Informed Consent for Genomic Sequencing

As the use of genomic technology has expanded in research and clinical settings, issues surrounding informed consent for genome and exome sequencing have surfaced. Despite the importance of informed consent, little is known about the specific challenges that professionals encounter when consenting patients or research participants for genomic sequencing. We interviewed 29 genetic counselors and research coordinators with considerable experience obtaining informed consent for genomic sequencing to understand their experiences and perspectives. As part of this interview, 24 interviewees discussed an informed consent case they found particularly memorable or challenging. We analyzed these case examples to determine the primary issue or challenge represented by each case. Challenges fell into two domains: participant understanding, and facilitating decisions about testing or research participation. Challenges related to participant understanding included varying levels of general and genomic literacy, difficulty managing participant expectations, and contextual factors that impeded participant understanding. Challenges related to facilitating decision-making included complicated family dynamics such as disagreement or coercion, situations in which it was unclear whether sequencing research would be a good use of participant time or resources, and situations in which the professional experienced disagreement or discomfort with participant decisions. The issues highlighted in these case examples are instructive in preparing genetics professionals to obtain informed consent for genomic sequencing.     

Counseling Expectations Among Mexican American College Students: The Role of Counselor Ethnicity

Sixty‐five Mexican American undergraduates completed a battery of tests, including the Expectations About Counseling‐Brief Form B and the Marlowe‐Crown Social Desirability Scale‐Form XX. Statistical analyses showed significant counselor ethnicity and participant gender main and interaction effects on EAC‐B ratings related to client attitudes and behaviors, counselor attitudes and behaviors, counselor characteristics, and counseling process.