Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market

Individuals now have access to an increasing number of internet resources offering personal genomics services. As the direct-to-consumer genetic testing (DTC GT) industry expands, critics have called for pre- and post-test genetic counseling to be included with the product. Several genetic testing companies offer genetic counseling. There has been no examination to date of this service provision, whether it meets critics’ concerns and implications it may have for the genetic counseling profession. Considering the increasing relevance of genetics in healthcare, the complexity of genetic information provided by DTC GT, the mediating role of the internet in counseling, and potential conflicts of interest, this is a topic which deserves further attention. In this paper we offer a discourse analysis of ways in which genetic counseling is represented on DTC GT websites, blogs and other online material. This analysis identified four types of genetic counseling represented on the websites: the integrated counseling product; discretionary counseling; independent counseling; and product advice. Genetic counselors are represented as having the following roles: genetics educator; mediator; lifestyle advisor; risk interpreter; and entrepreneur. We conclude that genetic counseling as represented on DTC GT websites demonstrates shifting professional roles and forms of expertise in genetic counseling. Genetic counselors are also playing an important part in how the genetic testing market is taking shape. Our analysis offers important and timely insights into recent developments in the genetic counseling profession, which have relevance for practitioners, researchers and policy makers concerned with the evolving field of personal genomics.     

The Transnational Alliance for Genetic Counseling: Promoting International Communication and Collaboration

The Transnational Alliance for Genetic Counseling seeks to promote communication and collaboration among genetic counselor educators, internationally. Connecting and building global relationships among colleagues also promotes the development of the genetic counseling profession. Genetic counselors everywhere can achieve deeper understanding of their work by seeking international perspectives.     

Clinical Cardiovascular Genetic Counselors Take a Leading Role in Team-based Variant Classification

We sought to delineate the genetic test review and interpretation practices of clinical cardiovascular genetic counselors. A one-time anonymous online survey was taken by 46 clinical cardiovascular genetic counselors recruited through the National Society of Genetic Counselors Cardiovascular Special Interest Group. Nearly all (95.7%) gather additional information on variants reported on clinical genetic test reports and most (81.4%) assess the classification of such variants. Clinical cardiovascular genetic counselors typically (81.0%) classify variants in collaboration with cardiologist and/or geneticist colleagues, with the genetic counselor as the team member who is primarily responsible. Variant classification is a relatively recent (mean 3.2 years) addition to practice. Most genetic counselors learned classification skills on the job from clinical and laboratory colleagues. Recent graduates were more likely to have learned this in graduate school (p?<?0.001). Genetic counselors are motivated to take responsibility for the classification of variants because of prior experiences with variant reclassification, inconsistencies between laboratories, and incomplete laboratory reports. They are also driven by a sense of professional duty and their proximity to the clinical context. This practice represents a broadening of the skill set of clinical cardiovascular genetic counselors and a unique expertise that they contribute to the interdisciplinary teams in which they work.     

Roles of Genetic Counselors in South Africa

Genetic counseling is a growing health profession in South Africa. Training (set up in 1988) and registration are in place, but job creation remains challenging. The aim of the present study was to investigate the roles played by genetic counselors in the provision of genetic services, in South Africa. A questionnaire comprising items on the types of roles they performed was constructed and counselors were asked to make the log-books, in which they recorded their daily counseling activities, available. A check list was drawn up so that relevant information could be collected systematically from these log-books. Then departmental statistics were accessed from the two universities providing genetic services and genetic counselor training. Structured interviews were conducted with the genetic counselors (16 of 23 participated), and data were collected from their completed questionnaires, log-books and the departmental statistics, for the years 2007 and 2008. These data were analyzed and the findings showed that the counselors counseled about one third (39 %) of all the cases seen at genetic clinics per annum, and the total numbers were increasing. They counseled for 57 different genetic disorders, and their clients represented the range of local ethnic groups. They also had educational, research, marketing and administrative roles. They expected to expand these roles and advance the profession in future. Genetic counselors are versatile, playing several significant roles. As these become better recognized, demand for their services should increase, jobs should be created and the service expanded.     

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.     

From Campers to Counselors: a Resource for Prospective Genetic Counseling Students

When thinking about the future of the genetic counseling field, one place to start is with prospective genetic counseling graduate school applicants. Although resources and mentorship opportunities exist for genetic counselors entering the field, the process of deciding on a career, applying to graduate programs, and being admitted can be daunting. As members of the profession, we should take responsibility for ensuring that individuals have the information and resources necessary to make an educated decision about whether genetic counseling is the correct path for them and to take the initial steps along this path. In this article, we present our Genetic Counseling Boot Camp as a model for other genetic counselors to use in developing their own local programs. This type of program can benefit prospective genetic counselors as they begin their professional journeys and can also provide value for the organizers and presenters who are already seasoned in the field.     

Cystic Fibrosis Prenatal Screening in Genetic Counseling Practice: Recommendations of the National Society of Genetic Counselors

For over a decade, prenatal screening for cystic fibrosis (CF) has been considered a model for the integration of genetic testing into routine medical practice. Data from pilot studies and public policy discourse have led to recommendations by some professional organizations that CF screening should be offered or made available to pregnant women and their partners, and to couples planning a pregnancy. It is crucial that genetic counselors gain thorough understanding of the complexities of CF and the implications of positive test results, so that they may serve as a reliable, educated referral base and resource for health care providers and their patients. While not all pregnant women will be referred for genetic counseling prior to CF carrier testing, genetic counselors often will be asked to counsel clients after they have a positive test result, or who are found to be at increased risk. Genetic counselors can play an important role in providing accurate and current information as well as support for patients informed decisions. These recommendations were created by a multicenter working group of genetic counselors with expertise in CF and are based on personal clinical experience, review of pertinent English language medical articles, and reports of expert committees. The recommendations should not be construed as dictating an exclusive course of management, nor does the use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care providers professional judgment based on the clinical circumstances of a particular client.     

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.     

Professional Issues of International Genetic Counseling Students Educated in the United States

International students have unique personal and academic challenges during their training in genetic counseling programs across the United States (U.S.). Previous research has explored their motivations and experiences; however, there is scant research on how their international status affects the post-graduate experience. The current study used semi-structured phone interviews to explore the professional issues that international students face throughout their educational and professional careers. Twenty-six participants were interviewed including international genetic counseling students in their second years of training and international genetic counselors who graduated from a U.S.-accredited program. Participants included six, second-year students, twelve genetic counselors employed in the U.S., six employed in Canada, and one employed in the United Kingdom (U.K.). Qualitative analysis of interviews captured the common experiences and challenges international students faced during their training and post-graduation. Participants stated that they applied to programs in the U.S. because there is wide transferability of qualifications across the world, and there is limited or no opportunities for masters level genetic counseling training in their home country. Most participants who had applied for jobs in the U.S. experienced difficulties regarding unfamiliarity of human resources (HR) departments and Border Control Officers with international genetic counselors (GCs) and their visa requirements. The results suggest that currently there are insufficient job resources tailored to international genetic counselors, and an inadequate availability of peer support. The results also speak to the need to develop resources for prospective international students and for international GCs seeking jobs, and establishment of a peer support network. These resources may also provide assistance to genetic counseling training programs and employers to address the challenges faced by international genetic counselors.     

The Genetic Counseling Workplace—An Australasian Perspective. A National Study of Workplace Issues for Genetic Counselors and Associate Genetic Counselors

Genetic counseling in Australasia (Australia and New Zealand) has been recognized as a profession since the 1980s and has steadily expanded over the past 20 years. The demography of major cities with metropolitan sprawl and sparsely populated rural areas has led to the establishment of 3 types of genetics units: main units in cities, metropolitan outreach, and rural outreach units. A questionnaire was developed to obtain information about the needs, resources, and day-to-day operation of the genetic counselors. The questionnaire addressed the areas of resource availability, professional development, responsibility of genetic counselors in the clinical setting, and their involvement in promotion of the service and public education. Differences observed between the 3 settings in all of these areas included large clinical loads for metropolitan outreach counselors, varying responsibilities in the clinical setting, and a lack of support and resources for rural outreach counselors. Australasian Genetic counselors were found to have a significant interest in developing mechanisms for supervision and were keenly interested in maintaining credentials and professional role development. The results of this study allows genetic counselors themselves to have a better understanding of the roles of their colleagues in the different units; they can also be used by service providers in establishing and supporting genetic counselors, and identifying inequalities and deficiencies in the different practice areas.     

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.     

Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors

These cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of identifying at-risk individuals through 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 Cancer Genetic 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. Key components include the intake (medical and family histories), psychosocial assessment (assessment of risk perception), cancer risk assessment (determination and communication of risk), molecular testing for hereditary cancer syndromes (regulations, informed consent, and counseling process), and follow-up considerations. 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.     

Anti‐Semitism and Insensitivity Toward Jews by the Counseling Profession: A Gentile's View on the Problem and His Hope for Reconciliation—A Response to Weinrach (2002)

The purpose of this article is to suggest solutions to the problems of anti‐Semitism and insensitivity toward Jews in the counseling profession, which were discussed by S. G. Weinrach (2002). Specifically, Gentiles are urged to promote healing between Gentile and Jewish counselors by acknowledging that anti‐Semitism exists, exploring biases about Jews, learning more about Jewish history and culture, and expressing genuine appreciation for Jewish colleagues. Also, Jewish counselors are invited to assist Gentiles in these efforts by affirming the good will of potential Gentile allies. Other pressing issues the profession must address, such as clarifying the boundaries between professional duties and the expression of personal religious and political convictions, are discussed. Above all else, this article communicates hope that Jewish and Gentile counselors can achieve a reconciliation that will enhance the counseling profession.     

The Experience of Leader-Led Peer Supervision: Genetic Counselors' Perspectives

As we proceed through our professional lives, it is essential that we challengeourselves in order to continue to develop our genetic counseling skills. Conferences, workshops,post-graduate courses, journal clubs, and involvement in professional organizations havebecome the traditional methods of continuing education for post-graduate geneticcounselors. While these forums address the need to stay updated on scientific orinformation-based topics, there is little available to counselors to promote growth incounseling skills. A group of Boston-based genetic counselors describe how their leader-ledsupervision group has established a setting to meet the needs of its members both forsupport and continued counseling training. We outline here the evolution of this group andhow it has become a valued part of our professional lives. We feel that the model of leader-ledpeer supervision holds great value in helping genetic counselors continue to enhancetheir interpersonal skills in a supportive, safe, and challenging environment. It is our hopethat others will elect to form similar groups in their own communities, thereby creating newopportunities for growth within the genetic counseling profession.     

Certification of Specialties: Not If,But How

The guest editorial and featured articles have established the fact of counseling specialties and also that counselors have no clear or consistent scheme to recognize professional specialization. If counselors expect external recognition of and respect for their credentials, the credentials first must be recognized and understood by counselors. The experiences of other professions suggest strategies, but counselors must determine their own way of recognizing specialties without denying counselors' common identity. The profession and practice of counseling will be strengthened if all counselors have a minimum foundation of counseling knowledge and competencies and build accepted specializations on that foundation. The counseling profession must distinguish among work settings, professional interests, and specializations as a prerequisite to a coherent scheme of recognizing specialties.     

Psychological Aspects of Genetic Counseling. IX. Teaching and Counseling

The goals, philosophies, and procedures of the teaching and counseling approaches to genetic counseling are differentiated and compared. The teaching approach, inherited from academic practitioners earlier in this century, appears to remain the dominant form of contemporary practice. With the introduction of more nonphysician professionals, attempts are being made to combine a teaching model with counseling procedures. The goals of the two models are conspicuously different; one attempts to end up with an educated counselee whereas the other hopes to leave the latter psychologically more autonomous and functional. Both models have strengths and limitations. The teaching model is essentially a form of health education, not counseling, and, with some exceptions, tends to fulfill its goals. The strategy of teaching, however, tends to undermine the psychological self-directedness of counselees and thus interferes with the processes they need to draw on to make autonomous decisions. The strength of the counseling model is in helping counselees reach decisions and deal with the personal meaning of information. However, applying this model makes huge demands on the professional. Greater attention needs to be given by training programs to the pedagogical and counseling skills genetic counselors may need in their professional work.     

Lessons from Freelancing,Lighting Design to Genetic Counseling

Theatrical lighting design and genetic counseling may seem like antipodal career choices. The former was chosen from a belief in the dynamism of the theatrical experience, as well as love of the actual work. As I grew older, the powerful personal experiences of a life encompassing miscarriages, the birth of a child with a genetic disorder, and breast cancer profoundly directed my choice of a new career; one that I also love. Clearly, the day-to-day work is very different. However, people in both professions strive to create a transformative space for their respective public. Rather than being left behind, lessons learned by working as a freelancer have served as a source of inspiration as I have matured into my new career. Three specific strategies, supported by literature on career models, have been paramount. First, keeping an eye on the big picture encourages awareness of where the field of genetics and the genetic counseling job market are headed. That awareness leads to the advocacy necessary to achieve the outcomes genetic counselors want. Second, striving for continual personal growth keeps genetic counselors engaged and personally ready for professional changes. Third, networking provides the connections to make clinical and advocacy efforts successful, in addition to essential social support.     

Educating Genetic Counselors in Australia: Developing an International Perspective

The demand for genetic counseling services is increasing worldwide. This paper highlights the Australian experience of genetic counselor education and the history of the profession. The relevance of local factors, including the healthcare system, the education system and the small population in the evolution of the 1-year training programs are considered as an alternative model for emerging programs. The development of the education and training processes compared to that of other countries namely the United States of America (USA), the United Kingdom (UK) and Canada is discussed. The importance of international collaborations between the programs, to facilitate academic discussion and possible curriculum innovations, and to maintain professional understanding between genetic counselors is emphasized. Core genetic counseling competencies have been published for the UK and USA and an Australian set is proposed. In conclusion future directions are considered, including international issues around genetic counseling certification, reciprocity, and the potential for an Australian role in training genetic counselors in South East Asia.     

Sex Education and Intellectual Disability: Practices and Insight from Pediatric Genetic Counselors

Intellectual disability (ID) with or without other anomalies is a common referral for genetic counseling. Sessions may include discussions of reproductive implications and other issues related to sex education. Patients with ID regularly meet barriers when trying to obtain sex education due to the misperceptions of others as being either asexual or that such education would promote inappropriate sexual behavior. In this pilot study, we surveyed genetic counselors to explore their experiences with being asked to provide sex education counseling and their comfort in doing so for patients with ID ages 9–17. Results were analyzed from 38 respondents. Caregivers and patients most frequently requested information on puberty, sex abuse prevention, and reproductive health. Genetic counselors were most comfortable when they could provide sex education counseling within the context of a particular condition or constellation of features. They were least comfortable when they lacked familiarity with the patient, caregiver, or the family’s culture. The most frequently cited barriers that prevented genetic counselors from providing sex education counseling were lack of time, lack of training, the patient’s ID being too profound, and a belief that genetic counselors should not be responsible for providing sex education counseling. While many respondents reported that providing sex education counseling is not considered within the scope of a genetic counselor’s practice, they also noted that patients’ families initiate discussions for which counselors should be prepared. Respondents indicated that resource guides specifically designed for use by genetic counselors would be beneficial to their practice. Genetic counselors have the opportunity to embrace the role of advocate and broach the issue of sexual health with caregivers and patients by directing them toward educational resources, if not providing sex education directly to effectively serve the needs of patients and caregivers.     

International Exchange Training in Genetic Counseling: An Exploration of the Value in Exchange Experiences

International exchange training in genetic counseling is increasing, but research examining these experiences is lacking. In this study 309 genetic counseling students and genetic counselors completed an anonymous survey investigating six major research questions: (1) How prevalent are international genetic counseling experiences? (2) What types are pursued and why? (3) What supports and barriers exist? 3) What are the demographic characteristics of individuals accruing international experience? (5) Does international experience promote professional development? and (6) Do genetic counseling students and professionals perceive international experiences as beneficial? Most respondents were Caucasian females born in one of 25 countries. The most prevalent experiences involved either clinical observation or clinical training. Common motivations for pursuing international experience were personal growth, exposure to a different healthcare system, and travel opportunities. Outcomes included professionally-relevant experience and personal growth. Barriers included finances, limited availability of opportunities, and for those without international experience, family responsibilities. Additional findings, practice and training implications, and research recommendations are provided.