Genetic Counselors in “Nontraditional Roles”

The majority of genetic counselors work in a traditional role as members of a healthcare team; counseling patients about genetic conditions, coordinating clinics, providing patient education, and educating other health professionals about genetics.

Increasing demands for genetic expertise in health related fields has offered some genetic counselors new ways of using their training in genetic counseling:

• Genetic Counselors in Research
• Genetic Counselors in Diagnostic Laboratories
• Genetic Counselors Working for Internet Companies and Websites
• Genetic Counselors in Private Practice
• Genetic Counselors in the Pharmaceutical Industry
• Genetic Counselors in Public Health
• Genetic Counselors Teaching in Universities
• Genetic Counselors in Health Consulting

Genetic Counselors in Research
I am a study coordinator for clinical research projects to find genes, learn about the natural history of disorders, and run a clinical trial using alternative medicine to address chronic pain and suffering in persons with hereditary connective tissue disorders. I am responsible for study design, patient recruitment, data collection and management, providing genetic counseling and psychosocial support, delivering intervention services, data analysis and dissemination of results.”

“My responsibilities as a research genetic counselor include identification and recruitment of study participants, designing recruitment materials, administering cognitive testing to participants, providing pedigree analysis to assess appropriateness for the study, and maintaining the study databases.”

“I spend 50% of my time seeing patients in clinic and the other 50% of my time doing research. In my research position, I am currently involved with some collaborative projects with a large pharmaceutical company; I have written a protocol for an asthma survey that will be conducted in an Hispanic population and have written part of a booklet on asthma genetics for the company.”.

“I am a genetic counselor working at a university as a study coordinator for GENECARD, a gene identification study aimed at finding the genes that contribute to early onset coronary artery disease (CAD). While most of my time is spent on family ascertainment, it is also my job to monitor legal and ethical topics concerning genetics, genetic research, and genetic counseling, and provide updates and reviews of these issues to colleagues in and out of the research group. It is also my job to write grants and participate in the development and implementation of research ideas pertaining to ethical, legal and social issues related to human gene identification research.”

“As a research coordinator for genetic studies of neurological conditions, my job description has included recruiting families for linkage studies, tracing family histories to link families together, coordinating research evaluations, assisting in exams and videotaping, planning and executing field trips to examine small and large families, and database management of all the extensive exam data we collect.”

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Genetic Counselors in Diagnostic Laboratories
“I work for a genetic laboratory as a regional genetic counselor. I travel in the Western states providing training for genetic counselors and other health care providers interested in educating their patients about hereditary breast/ovarian and colon cancer and testing options. I also do presentations for both professional groups (eg tumor boards, grand rounds) and community forums.”

“I have worked for over two years in a clinical diagnostic laboratory that.also performs research in various areas. My role is mainly as a liaison.between the lab and the referring physicians and their patients. I receive.and make most phone calls to physicians about test results, sample.submissions, etc., and am available for their patients should they have.questions. I also help monitor sample submissions (i.e. do a little.marketing), develop brochures and provide most of the content of our.website, have teaching responsibilities inside and outside of the lab, and. I am involved in several on-going research projects. Finally, I am also.involved in the day-to-day activities within the lab such as working through.difficult test results and helping with personnel issues and protocols.within the lab.”

“As Area Manager for a diagnostic laboratory, I am responsible for facilitating genetic susceptibility testing for cancer risk in a 6 state region. I work with existing cancer risk assessment programs to make sure that they have the latest information and resources to perform genetic susceptibility testing. I also work to educate the surrounding communities (both physician and lay population) about genetic susceptibility testing for cancer risk and the availability of genetic counseling and testing at appropriate locations.”

“As Manager of Clinical Development for a diagnostic laboratory, I develop and implement innovative, cost effective, clinical genetic services and programs. I serve as a resource to the general staff, managed care organizations, and health care providers regarding genetic case management, standardized practice guidelines and outcomes. I provide consultation to the marketing department regarding clinical services and genetic testing of marketing materials. I also manage the development and growth of regional genetic counseling services.”

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Genetic Counselors Working for Internet Companies and Websites
“I'm a subject matter expert specializing in website content writing and.development and software tool development. I'm also involved in conducting.research studies to test our tools in patient and non-patient (general).populations. As part of the genetics team, we are also called upon to.provide input on business development matters and to participate in.marketing/PR efforts (i.e., representing the company at trade show booths).”

"My primary role is in verifying information about laboratories for online publication. I also verify nomenclature used by the laboratory by checking current resources. Both of these roles are for all new and updated laboratory profiles. A secondary role is to read, review, and edit each profile in its entirety.”

“I’m the Director of Clinical services for a company developing online products in genetics for physicians and consumers. I’m responsible for overseeing the work of team projects and managing clinical staff. I participate in the development of new products and services, and use my clinical experience to provide the ethical and clinical framework around business development decisions.”

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Genetic Counselors in Private Practice
“ I decided to enter private practice so I would have autonomy and flexibility. The autonomy allows me to practice as I want to, which is to. give excellent care. The flexibility allows me to work on my time schedule, which tends to be later at night and on weekends, especially for the research and reading. Cancer risk assessment provided the perfect field for me, as I can be somewhat more independent, and we, as counselors, have unique expertise in this area. I still do all the general patient related things that most genetic counselors do but in addition, I market my services, negotiate contracts and services with physician offices, develop my own written information, and monitor my own budget and billing.”

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Genetic Counselors in the Pharmaceutical Industry
"I work for a large pharmaceutical company as a genetic education specialist. My responsibilities include: identifying and characterizing the key genetics education and training needs for the diverse array of business groups within and associated with the company; creating a worldwide strategic plan for genetics education that reflects the international perspectives, experiences, and sensitivities relevant to the genetics department objectives; creating, implementing and analyzing metrics for assessing the impact of the genetics education and training programs developed; acting as a corporate resource for expertise in genetics content and education; collaborating with business groups within the company to develop genetics education materials for use by outside constituents; and developing innovative educational materials in multimedia formats for use internally and externally."

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Genetic Counselors in Public Health
I am a registry coordinator for my state's Fetal Abnormalities Registry, a research project supported by the Center for Disease Control and through the department of Health and Senior Services. My job responsibilities include obtaining informed consent and administering an hour-long questionnaire (eliciting information regarding pregnancy, family and medical history in depth) in person or via telephone. Other administrative duties include personnel supervision, database construction & maintenance, web site construction & maintenance, and obtaining and reviewing medical records."

"My job, within the state Bureau of Chronic Disease Services in Division of Chronic Disease Prevention and Adult Health, is to raise awareness of genetics in our programs regarding common diseases of adult onset, including cancers of the breast, ovary, colon and prostate; cardiovascular disease; Alzheimer's disease and diabetes."

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Genetic Counselors Teaching in Universities
"For the past 9 years, I have been the Director of Clinical Placements for a graduate training program in Genetic Counseling. I teach counseling and preprofessional courses and supervise the clinical internships. I am also involved in administration (planning and admissions) of the program as well."

Genetic Counselors in Health Consulting
"I work for a Fortune 500 health consulting firm as the Deputy Project Director on a federal research project to evaluate 120 birth defects prevention demonstration (grant) programs for drug addicted mothers and their children. I develop evaluation measures, train site visitors, work with projects around the country to facilitate data collection and site visits, conduct site visits, write summary reports and execute a national meeting each year."

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