A Comparative Analysis of Ethical and Professional Challenges Experienced by Australian and U.S. Genetic Counselors

Ethical issues are an inevitable part of genetic counseling practice. Prior research identified 16 domains of ethical and professional challenges encountered by practitioners in the United States. In order to further validate these domains, the present study surveyed Australian genetic counselors. Sixty-three respondents rated the frequency with which they encountered each domain, and 39 individuals also provided personal anecdotes detailing their most challenging ethical and professional dilemmas. Every domain reportedly was experienced by the Australian sample. However, there were some differences between Australian respondents and U.S. genetic counselors in frequencies of domain occurrence, and in strategies recommended for resolving them. Several anecdotes illustrate challenging situations due to Australia’s geography, universal healthcare system, and the genetic counseling profession’s evolution in that country. The results generally validate domains identified for U.S. genetic counselors. They further suggest that certain ethical issues may manifest in ways unique to a given country, and therefore they must be addressed in a culturally-appropriate manner.     

Modern Advances in Genetic Testing: Ethical Challenges and Training Implications for Current and Future Psychologists

The ethical implications for psychological practice of genetic testing are largely unexplored. Predictive testing can have a significant impact on health and well-being, and increasing numbers of individuals with knowledge of their risk for various disorders are likely to present for psychotherapy. In addition, more people will struggle with the decision of whether to obtain information regarding their genetic material. Psychologists will need to have the appropriate knowledge and clinical skills to effectively counsel this population. This article highlights the relevant ethical issues surrounding psychological treatment of individuals pursuing or considering undergoing genetic testing. These issues are extended to psychologists working in research, education, and policy domains. Recommendations for graduate training programs to facilitate current and future practitioner competence are also discussed.     

Professional Ambivalence: Accounts of Ethical Practice in Childhood Genetic Testing

Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere, the role of communication is a key aspect in the transmission of ‘genetic responsibility’ between adults and children. In the professional sphere, genetic responsibility is an interactional accomplishment emerging from the sometimes competing views over what constitutes the ‘best interests’ of the child in relation to parental preferences on the one hand, and professional judgements on the other. In the present paper we extend our previous research into parental accounts of childhood genetic testing and explore the ethical accounts of professionals in research interviews. Interviews (n = 20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their families. We first identify four inter-related themes—juxtaposition of parental rights vis-à-vis child’s autonomy, elicitation of the child’s autonomy, avoidance of parental responsibility and recognition of professional uncertainty. Then, using Rhetorical Discourse Analysis, we examine the range of discourse devices through which ethical accounts are situationally illustrated: contrast, reported speech, constructed dialogue, character and event work. An overarching device in these ethical accounts is the use of extreme case scenarios, which reconstruct dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis suggests that professional judgement is not a simple matter of implementing ethical principles but rather of managing the practical conditions and consequences of interactions with parents and children. We conclude that more attention is needed to understand the way professional practitioners formulate judgements about ethical practice.     

Nuance, Complexity, and Context: Qualitative Methods in Genetic Counseling Research

Because of its potential for capturing complexity and process and its focus on communicating the meaning in human action, qualitative research is rapidly gaining acceptance in a wide variety of disciplines. Various qualitative approaches to research support its potential usefulness in genetic counseling research. Formulation of research questions and selection of appropriate qualitative methods are the first step. Interviewing, narrative analysis, focus groups, ethnography/participant observation, and participatory action research are only some of the most popular techniques that may be suitable in various situations. Processes of evaluation, analysis, and even ethical issues often differ somewhat from quantitative research. This article discusses these issues and the potential value of qualitative methods for research related to genetic counseling.     

The Genetic Testing of Children for Cancer Susceptibility: Ethical,Legal, and Social Issues

Genetic testing for cancer susceptibility raises many ethical, legal, and social concerns, particularly when testing children is considered. The complexity of defining medical and psychosocial risks and benefits of genetic predisposition testing for multifactorial disorders, like cancer, is discussed. Presumed incompetence of children and adolescents and questionable ability of many adults to understand complex genetic information raise informed consent questions. Guidelines can aid professionals but there must also be a means of evaluating individual cases. Further research is needed to determine optimal methods of educating children and adults about genetic issues and to discriminate factors which contribute to satisfaction with decision-making about genetic testing. Legal issues and practical considerations are examined involving a duty to warn family members about genetic susceptibility and to re-contact previously-tested individuals as knowledge advances. Recommendations are offered concerning roles for social scientists and legal scholars in ethical integration of genetic testing into our medical and social framework.     

A survey of genetic counselors' strategies for addressing ethical and professional challenges in practice

There is limited research about ethical and professional dilemmas that genetic counselors encounter in their practice and their strategies for addressing them. In this study, 454 genetic counselors rated the frequency with which they encounter each of 16 ethical/professional challenges identified and categorized previously (McCarthy Veach P, Bartels DM, LeRoy BS (2001) J Genet Couns 10(2):97–119). Over 40% indicated these issues occurred frequently: patient emotions, diversity, financial constraints, uncertainty, and colleague error. Two hundred and fifty-five respondents provided personal anecdotes describing exceptionally challenging situations and recommended strategies for addressing them. Most of their anecdotes involved informed consent, value conflicts, confidentiality, colleague error, withholding information, and resource allocation. The most frequently recommended strategies were further discussion with patient, consultation with other professionals, and referral to other health sources. Thirty-five respondents were unable to/did not offer strategies. Respondent demographics were not related to frequency of issues, type of anecdote, or recommended strategies. Practice, policy, and research implications are discussed.     

Biobanks: Importance,Implications and Opportunities for Genetic Counselors

Biobanks are collections of human biological tissue specimens and related health data. Biobank research hopes to provide novel insights into the genetic component of disease, ultimately leading to a more personalized approach to healthcare. However, biobanks have sparked debate due to the ethical, legal, and social implications surrounding utilization of population samples and data. These controversies include issues of consent, privacy and confidentiality, return of results and data-sharing. This paper provides an overview of the different types and scope of biobanks and an examination of the most pertinent ethical, legal and social considerations surrounding such research, as well as how some of these concerns are being addressed. The paper finishes with a discussion of the relevance of biobanks to the genetic counseling field and concludes that genetic counselors are in a position to make a unique, educated and practical contribution to the ongoing dialogue and direction of biobank research.     

Ethical and Professional Issues for Psychologists and Counselors Employing Biofeedback in Counseling Settings

Biofeedback training is a relatively new procedure that is being incorporated into the counseling services of psychologists and counselors. If the highest professional standards and the appropriate safeguards for clients' welfare are to be maintained, careful attention should be given to the ethical and professional issues involved. The American Psychological Association's (1977) ethical standards for psychologists are the basis of the discussion. It is hoped that the discussion will stimulate further consideration of ethical and professional issues of the clinical application of biofeedback among practitioners.     

Students' Ethical Awareness and Conceptions of Research Ethics

The study focused on university students' understanding and conceptions of ethical issues in research. Domain-specific and domain-transcending measures were developed to gauge the students' awareness of ethical issues. Responses were obtained from 269 undergraduate and graduate students at a U.S. regional university. Participant withdrawal, the debriefing of research participants, the dissemination of findings, and giving credit to co-contributors were the most challenging ethical issues for the students. Ethical awareness was predicted by professional and organizational socialization, and perspective taking. Contextualization greatly improved the students' ability to recognize ethical issues. Simulations and role-taking are suggested as the means with which to teach students about the ethical issues perceived as challenging.     

Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors

Updated from their original publication in 2004, these cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of counseling at-risk individuals through genetic cancer risk assessment with or without genetic testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment and counseling as well as the personal expertise of genetic counselors specializing in cancer genetics. The recommendations are intended to provide information about the process of genetic counseling and risk assessment for hereditary cancer disorders rather than specific information about individual syndromes. Essential components include the intake, cancer risk assessment, genetic testing for an inherited cancer syndrome, informed consent, disclosure of genetic test results, and psychosocial assessment. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care provider's professional judgment based on the clinical circumstances of a client.     

The Nature and Significance of Behavioural Genetic Information

In light of the human genome project, establishing the genetic aetiology of complex human diseases has become a research priority within Western medicine. However, in addition to the identification of disease genes, numerous research projects are also being undertaken to identify genes contributing to the development of human behavioural characteristics, such as cognitive ability and criminal tendency. The permissibility of this research is obviously controversial: will society benefit from this research, or will it adversely affect our conceptions of ourselves and each other? When assessing the permissibility of this research, it is important to consider the nature and deterministic significance of behavioural genetic information. Whilst todate there has been much discussion and debate about the properties of genetic information per se and genetic determinism, this has not been applied to behavioural genetic research and its ethical implications. Therefore, this paper elucidates how behavioural genetic information can be distinguished from other types of genetic and non-genetic information and also synthesises the determinative significance of genetic factors for the development of human behavioural traits. Undertaking this analysis enables the ethical issues raised by this research to be debated in an appropriate context and indicates that separate policy considerations are warranted.

     

Genetic Information,Non-Discrimination,and Privacy Protections in Genetic Counseling Practice

The passage of the Genetic Information Non Discrimination Act (GINA) was hailed as a pivotal achievement that was expected to calm the fears of both patients and research participants about the potential misuse of genetic information. However, 6 years later, patient and provider awareness of legal protections at both the federal and state level remains discouragingly low, thereby, limiting their potential effectiveness. The increasing demand for genetic testing will expand the number of individuals and families who could benefit from obtaining accurate information about the privacy and anti-discriminatory protections that GINA and other laws extend. In this paper we describe legal protections that are applicable to individuals seeking genetic counseling, review the literature on patient and provider fears of genetic discrimination and examine their awareness and understandings of existing laws, and summarize how genetic counselors currently discuss genetic discrimination. We then present three genetic counseling cases to illustrate issues of genetic discrimination and provide relevant information on applicable legal protections. Genetic counselors have an unprecedented opportunity, as well as the professional responsibility, to disseminate accurate knowledge about existing legal protections to their patients. They can strengthen their effectiveness in this role by achieving a greater knowledge of current protections including being able to identify specific steps that can help protect genetic information.     

Ethics, biotechnology, and global health: the development of vaccines in transgenic plants

As compared with conventional vaccine production systems, plant-made vaccines (PMVs) are said to enjoy a range of advantages including cost of production and ease of storage for distribution in developing countries. In this article, we introduce the science of PMV production, and address ethical issues associated with development and clinical testing of PMVs within three interrelated domains: PMVs as transgenic plants; PMVs as clinical research materials; and PMVs as agents of global health. We present three conclusions: first, while many of the ethical issues raised by PMVs are familiar, PMVs add a new dimension to old issues, and raise some novel issues for ethicists and policy-makers; secondly, it is premature to promise broad applicability of PMVs across the developing world without having demonstrated their feasibility; thirdly, in particular, proponents of PMVs as a solution to global health problems must, as a condition of the ethical conduct of their research, define the commercial feasibility of PMVs for distribution in the developing world.     

Boundary Issues and Multiple Relationships in Genetic Counseling Supervision: Supervisor,Non-supervisor,and Student Perspectives

Boundary issues and multiple relationships potentially affect all supervision interactions. Boundary crossings are departures from the strictest professional role and may or may not benefit supervisees. Boundary violations are outside common practice and may place supervisees at significant risk. Multiple relationships occur when supervisors concurrently or consecutively hold two or more roles with supervisees. Studies in other fields indicate supervisors and supervisees may be uncertain about professional conduct regarding these issues. In this study, genetic counselor supervisors (n?=?126), non-supervisors (n?=?72), and genetic counseling students (n?=?129) completed an anonymous survey investigating four major questions: 1) Are various boundary issues and multiple relationships perceived as differentially appropriate? 2) Do supervisor, non-supervisor, and student perceptions differ? 3) What challenging situations have respondents experienced? and 4) What management strategies did they use? There was general agreement among groups in their appropriateness ratings of 56 hypothetical supervisor behaviors, although supervisor ratings tended to reflect stricter boundaries regarding the appropriateness of interactions than student ratings. A majority rated unavoidable boundary crossings and supervisor multiple relationships involving an academic relationship as most appropriate, and romantic/sexual multiple relationships and/or boundary violations as least appropriate. Analysis of respondents’ actual challenging situations revealed many involved boundary violations, placed students at risk of harm, and often resulted in student compliance.     

Examination for Professional Practice in Psychology Subtest Scores of Professional and Traditional Clinical Psychology Program Graduates

Professional school clinical psychology graduates not only exhibit inferior performance on the research subtest of the Examination for Professional Practice in Psychology (EPPP; D. I. Templer & M. E. Tomeo, 1998), but they also perform less well on the four more professionally oriented subtests: diagnosis, intervention, professional/ethical/legal issues, and application to social systems. Graduates of free-standing professional schools exhibited performances inferior to those of graduates of non-free-standing professional schools on the diagnosis, intervention, and professional/ethical/legal subtests.     

Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors

These cancer genetic counseling recommendations describe the medical, psychosocial and ethical implications of identifying at-risk individuals for hereditary breast and ovarian cancer (HBOC) through cancer risk assessment, with or without genetic susceptibility testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors’ Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment as well as the professional expertise of genetic counselors with significant experience in education and counseling regarding hereditary breast and ovarian cancer. Critical components of the process include the ascertainment of medical and family histories, determination and communication of cancer risk, assessment of risk perception, education regarding the genetics of HBOC, discussion of molecular testing for HBOC if appropriate (including benefits, risks and limitations) and any necessary follow-up. These recommendations do not dictate an exclusive course of management or guarantee a specific outcome. Moreover, they do not replace the professional judgment of a health care provider based on the clinical situation of a client.     

Student development and ownership of ethical and professional standards

Ethics and professional conduct are vital to civil engineering undergraduate curricula. Many programs struggle to ensure that students are given an adequate exposure to and appreciation of ethical and professional conduct issues. This paper describes a two-part ethics/professionalism project used in a senior-level course taught at the University of Arkansas. Initially, students scruitinize ethical canons and standards of professional conduct published by the American Society of Civil Engineers (ASCE) and the National Society of Professional Engineers (NSPE), and prepare an essay concerning the applicability of these standards. The second part of the project builds on the first: based on the opinion(s) generated in Part 1, students are asked to develop a set of canons or standards targeted specifically to the undergraduate student, and suggest processes for implementing those standards within the department. Project objectives include: (1) exposure to nationally-recognized ethical canons and standards of professional conduct; (2) personal formulation of ethical and professional standards; (3) skill enhancement for non-technical written communications. Feedback by students prior to and after the project indicates success in meeting all objectives. The feedback also indicates that for some students, definitions and applications of ethics and professionalism are being broadened to include more than academic honesty issues. An earlier version of this paper was presented at the “Ethics and Social Responsibility in Engineering and Technology” meeting, New Orleans, 2003.     

Ethics, Engineers and Drama

This paper describes four plays which illustrate ethical themes relevant to engineers and which could be used as a resource for engineers who wish to explore ethical topics and their relationship with professional practice. The plays themselves have been chosen because a character in the play is involved in engineering activities. Each play is analysed to highlight some of the ethical issues the play raises. Often ethical topics are presented in abstract terms but the plays relate ethical issues to individuals and individual actions in specific situations that connect either directly or figuratively to practical situations engineers find themselves in. The paper describes how the resources have or could be used in an educational programme.     

Examination for professional practice in psychology subtest scores of professional and traditional clinical psychology program graduates

Professional school clinical psychology graduates not only exhibit inferior performance on the research subtest of the Examination for Professional Practice in Psychology (EPPP; D. I. Templer & M. E. Tomeo, 1998), but they also perform less well on the four more professionally oriented subtests: diagnosis, intervention, professional/ethical/legal issues, and application to social systems. Graduates of free-standing professional schools exhibited performances inferior to those of graduates of non-free-standing professional schools on the diagnosis, intervention, and professional/ethical/legal subtests.     

Infusing Professional Ethics Into Counselor Education Programs: A Multicultural/Social Justice Perspective

Multiculturalism and social justice counseling issues influence counselors' ethical thinking and behavior. Counselor educators are responsible for facilitating students' understanding of the relevance of multicultural/social justice counseling issues and ethical standards for professional practices. Added insights in these areas aid students to work within a culturally diverse society. This article focuses on the importance of addressing these complex issues by outlining strategies to infuse ethics into counselor education programs from a multicultural/social justice counseling perspective.