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

P1: JLS Journal of Genetic Counseling [jgc]

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Style file version Nov 28th, 2002

C 2003) Journal of Genetic Counseling, Vol. 12, No. 5, October 2003 (°

The Genetic Counseling Workplace—An Australasian Perspective A National Study of Workplace Issues for Genetic Counselors and Associate Genetic Counselors Carolyn James,1,4 Sharron Worthington,2 and Alison Colley3

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

1 Queensland

Clinical Genetics Service, Toowoomba Base Hospital, Toowoomba, Queensland, Australia. 2 Genetics Service of Western Australia, King Edward Memorial Hospital for Women, Subiaco, Western Australia, Australia. 3 Clinical Genetics Unit, Liverpool Hospital, Liverpool, New South Wales, Australia. 4 Correspondence should be directed to Carolyn James, Genetics Service, Toowoomba Base Hospital, Private Mail Bag 2, Toowoomba, Queensland, 4350, Australia; e-mail: clj [email protected]. 439 C 2003 National Society of Genetic Counselors, Inc. 1059-7700/03/1000-0439/1 °


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establishing and supporting genetic counselors, and identifying inequalities and deficiencies in the different practice areas. KEY WORDS: genetic counseling; Australia; workplace issues; resource utilization.

INTRODUCTION Genetic counseling has been a recognized profession in Australia and New Zealand (collectively known as Australasia) since the mid 1980s. The role of the genetic counselor is still evolving today. There are now over 100 associate and HGSA (Human Genetics Society of Australasia) qualified genetic counselors employed in a variety of positions, including specialized areas such as cancer genetics, prenatal diagnosis counseling, and more recently IVF. The majority of counselors are in one of three types of clinical settings. These are main units, usually within a teaching hospital with medical geneticists on site, metropolitan outreach (counselors based in cities without a geneticist on site), and rural/remote outreach where a genetic counselor is a sole practitioner usually in a community health setting. Professionals in Genetics Services hold various perceptions about the different roles and resources of genetic counselors depending on where they are based. Outreach, particularly in rural areas, is perceived to be isolated and supervision is thought to be limited in both quality and quantity. Main city units, however, are perceived to be so busy they have little time for supervision and education. They are considered to be better resourced and better funded, with rural outreach in particular, having less funding for personal educational development, for example, conference attendance. There is little documentation addressing these perceptions in Australia. Positions were created, job descriptions written, and genetic counselors employed based on local needs, financial constraints, and some knowledge (Lowry and Bowen, 1990; World Health Organization [WHO], 1972). It is only in recent years this has included guidelines for the structure of Clinical Genetics Units and the practice of genetic counseling developed by the HGSA (1999a,b). The purpose of this study was to obtain a clearer picture of the day-to-day situation for counselors, documenting their roles and resources. This knowledge will be useful in the establishment of future genetic counselor positions and the development of guidelines for service provision and resources for genetic counselors in the different types of units. Demographics Australia is comprised of eight states and territories, New South Wales (NSW), Queensland, Victoria, South Australia, Northern Territory, Western Australia,


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Tasmania, and Australian Capital Territory, with counselors in each except Northern Territory, which is serviced by South Australia. Tasmania and the Australian Capital Territory (ACT) do not employ geneticists but obtain these services from Victoria and NSW respectively. New Zealand is two islands, North and South, and has five genetic counselors located in three centers. The source of the funding for genetic services varies from state to state. Queensland, South Australia, and Victoria have centralized services where all genetic counselors are employed by the respective state health service. In NSW the state is divided into health areas that receive their own funding. Genetic counselors in NSW are individually employed by each Area Health Service. Although each state and territory runs its own genetic counseling service, genetic counselors are all required to comply with national guidelines developed by the HGSA and obtain nationally recognized qualifications. To become fully qualified as a genetic counselor a person is required to do a minimum of 1 year postgraduate study to obtain the Part 1 qualification. In many instances this is an essential requirement to become employed. Once employed as an associate genetic counselor there is a minimum of 2 years on the job training. The 2 years of supervised training includes (1) writing up 20 cases in detail, (2) summarizing a further 100 cases, and (3) having both genetic and counseling supervision each week to obtain Part 2 and become a HGSA qualified genetic counselor. METHOD A questionnaire consisting of 34 questions was sent to health professionals in all fields of genetic counseling, excluding clinical geneticists and fellows. The target group was assembled from lists of known genetic counseling units in Australia and New Zealand. However, the questionnaire was anonymous when returned. It covered five main areas: (1) Demographics, nine questions covering level of qualification, geographical and clinical location, population covered, and amount of client contact), (2) Level of Responsibility (one question with 19 subsections covering clinical and some administrative duties performed in a genetic counseling clinic), (3) Education and Promotion, three questions with subsections specifying types of promotional activity, equipment used, and target audiences, e.g., support groups), (4) Resources and Technology, nine questions regarding access, use, and opinion of electronic resources, i.e., computer, Internet, e-mail, fax, client database, pedigree drawing software, and teleconferencing; and paper-based resources such as journals and textbooks), and (5) Professional Development (12 questions encompassing type and frequency of contact with other genetic counsellors and geneticists, type and frequency of supervision, physical access to supervision, e.g., was travel required to access it, professional affiliations, frequency of conference attendance, and level of financial support from employer). Most questions required a tick or cross for specific responses, for example, opinions regarding satisfaction


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with supervision and usefulness of resources were “very,” “moderately,” “not very,” or “not at all.” Frequencies of events such as supervision and promotional or educational events were either “always,” “sometimes,” “never,” or timeframes such as “weekly,” “monthly,” “2–4 months,” “6 months,” “yearly,” “sometimes,” “never.” There were areas for additional information to be provided. For the level of responsibility in a clinical setting, examples of situations or genetic conditions were requested and there were areas available for comments. The data was collated in a database with a numerical code for each person. It was analyzed using frequencies and percentages. RESULTS Questionnaires were sent to 107 nonmedical genetic health professionals and 76 (71%) were returned. Of those returned 33 were from health professionals in main genetics unit with geneticists on site (Main Unit), 10 from metropolitan outreach (Metro Outreach) with geneticists visiting on a regular basis, and 12 from rural outreach with a visiting geneticist (Rural Outreach). The remainder (21) were from health professionals who identified themselves as not working in general genetic units but in separate specialized areas such as prenatal diagnosis (7), cancer (5), Huntington Disease (2), IVF (2), metabolic (1), Fragile X (1), research (1), support (1), and education (1). The majority of the specialized services were located in cities and were set up similar to Main Unit or Metro Outreach. The data was analyzed according to health professional’s location with the focus on Main Units, Metro Outreach, and Rural Outreach. The distribution of counselors across the states varied according to population and geographic size with NSW employing the most genetic counselors (34) (Table I). As the numbers of respondents in the specialized areas are too few to provide meaningful comparisons the results are presented for Main Units, Metro Outreach, and Rural Outreach units only. All Main Units were based in public hospitals with 30 in general genetic units and 3 in family cancer units. Metro Outreach units were all hospital based, with 6 in general genetic units, 2 in family cancer units, and 2 in prenatal/fetal–maternal units. For Rural Outreach units, 3 were based in hospitals and 10 in community health centers. Of those 10, 4 were members of specific teams (e.g., Child Development Unit, Child and Family Health). Of the other categories all were based in hospitals with some in private hospitals (3 PND, 2 IVF). Accreditation and Training In Main Units 15% were in training for Part 1 Accreditation, 43% for Part 2, and 27% were fully certified. The remaining 15% were not involved in the HGSA Accreditation process at all. In comparison 80% of Metro outreach and 75% of


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Table I. Distribution of Respondents by Location and Area of Employment NSW/ACT QLD Population of Area (×1000) Area of employment Main Unit (MU) Metro Outreach (MO) Rural Outreach (RO) Specialized areas Cancer Fragile X Huntington disease Metabolic Prenatal diagnosis IVF Support networks Education Research Total

6464/311

3566

15 2 8

3 4 3

VIC/TAS

WA

SA/NT

NZ

4765.9/470 1884 1498/196 3800 2 3 1

3 1

5

1

4

4 1

1 2

1 3 2

4 1 34

10

Total

1 1 15

5

7

5

33 10 12 5 1 2 1 7 2 1 1 1 76

Abbreviations: NSW, New South Wales; ACT, Australian Capital Territory; QLD, Queensland; VIC, Victoria; TAS, Tasmania; WA, Western Australia; SA, South Australia; NT, Northern Territories; NZ, New Zealand.

Rural Outreach were training for Part 2, 20% Metro and 17% Rural Outreach were certified, and only 8% of Rural Outreach were not in training and were not certified. In all locations the number of years in training for Part 2 or since Accreditation was between 2 and 3 years. CLINICAL LOAD The population of the area serviced by the genetics unit was a contributing factor to the number of clients seen in a clinic. On average Metro Outreach saw the most clients per month and for both Metro Outreach and Rural Outreach only 30% of clients were seen with the geneticist compared with 50% of clients seen with a geneticist in Main Unit clinics. Non-genetic counseling duties such as administration, organizing non-genetic counseling clinics, and triage or intake of other clients were carried out by less Main Unit than outreach counselors (Table II). Table II. Client and Nonclient Activities

Average population of area serviced (n,000) Average client contacts/month % performing non-genetic counseling duties Hours of non-genetic counseling work/day performed by % listed above

Main Unit

Metro Outreach

Rural Outreach

>200 35 42 3.3

>200 41 60 2.5

100–200 26 60 3.0


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Of those who performed non-genetic counseling duties approximately a third of their day was spent on those duties, with Main Unit spending 1.6 hr, Metro Outreach 1.7 hr, and Rural Outreach 2.1 hr of every day on administrative duties. Of the 12 Rural Outreach genetic counselors, 7 performed non-genetic counseling duties, 5 of whom were in multidisciplinary teams. Of the remaining 4 who did not perform non-genetic counseling duties only 1 was in a multidisciplinary setting. Clinical Responsibility Clinical responsibility was separated into 19 separate tasks that covered the core duties expected of a genetic counselor. Respondents could indicate a combination of answers for each task. The choices were “Yes,” “No but would like to,” “No and would not like to,” “Depends on condition,” and “Only in Consultation with a geneticist.” The vast majority of genetic counseling professionals were performing the expected duties including making appointments, determining reason for client referral and client needs, obtaining family history and pedigrees, risk assessment, collecting clinical and laboratory information, discussing the psychosocial impact of diagnosis, discussing modes of inheritance, and patient education. However, some genetic counselors were performing tasks that might be considered to be outside of their role such as clinical examination. One Main Unit counselor performed clinical examinations with the use of video conferencing facilities. For others it was a visual examination only (Main Unit), or a preliminary examination during a home visit, which was often limited (Rural Outreach). Concerns were raised by a few counselors regarding clinical examination, as they believed that it is outside their role, that there is a need for counseling boundaries and therapeutic space, and it should only be done by a geneticist. Other duties counselors performed included ordering tests and giving results without a geneticist present. These were done in consultation with a geneticist and for many counselors the extent of their involvement was dependent on the specific condition. Some respondents from all three areas provided examples of the types of conditions and situations that they dealt with during a consultation without a geneticist present. These included Mendelian inherited conditions such as Huntington Disease, Cystic Fibrosis, Duchenne and Myotonic Muscular Dystrophies, and Haemochromatosis; chromosomal abnormalities such as trisomies and translocations; birth defects such as neural tube defects, and risks for breast cancer. Table III illustrates the results given for seven areas of clinical responsibility where there were marked differences between the three units. EDUCATION AND PROMOTION Educating others about genetic conditions and services is considered to be an integral part of a genetic counselor’s role. Rural Outreach counselors, who


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Table III. Clinical Responsibility (% Performing Duty)

Clinical examination Yes Depends Discuss condition Yes Depends Give recurrence risk figures Yes Depends Order tests on geneticists behalf Yes Depends Give results without geneticist present Yes Depends Refer to medical specialists Yes Depends Refer to allied health professional Yes Depends

Main Unit

Metro Outreach

Rural Outreach

0 9

0 20

0 42

36 52

60 20

58 17

70 30

90 10

25 58

67 12

80 10

42 42

70 21

60 30

50 33

39 45

50 30

25 42

82 12

90 10

58 25

Note. Depends on condition and/or only in consultation with geneticist.

had the lowest clinical load, spent the most time in promotion and education (Table IV). Liaising with other health workers, in particular women’s health nurses, was also predominantly performed by Rural Outreach and Metro Outreach Counselors. Promotion of the service through newspapers was used once or twice a year by almost half of all Main Units, Metro Outreach, and Rural Outreach counselors. Metro Outreach counselors were the least likely to use radio, poster, newspaper, or mail outs for promotion of their service and/or genetic education. When presenting information the most popular visual aid used was the overhead projector, with 100% of Main Unit and Metro Outreach and 82% of Rural Outreach counselors using it all or some of the time. Computer-based presentations such as PowerPoint were also very popular, with 80% of Metro Outreach and 66% of Main Unit Counsellors using it all or some of the time. Whiteboards and slides were used more in Rural Outreach and slides were used frequently by Main Unit.

RESOURCES The vast majority of respondents, irrespective of where they worked, had good access to computers and related technology. The majority of all respondents


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James, Worthington, and Colley Table IV. Frequency of Promotion/Education to Others (%)

Other health workers 1–2 months 6 months–1 year GPs 1–2 months 6 months–1 year Support groups 1–2 months 6 months–1 year Public 1–2 months 6 months–1 year University 1–2 months 6 months–1 year Newspaper 2–6 months Yearly/special occasions Mail out 2–6 months Yearly/special occasions Radio 2–6 months Yearly/special occasions Exhibit 2–6 months Yearly/special occasions Liaison with Women’s Health Nurse Regularly Sometimes Liaison with Breast Screen Clinics Regularly Sometimes Liaison with Mental Health Regularly Sometimes

Main Unit

Metro Outreach

Rural Outreach

45 35

60 20

100 0

15 33

20 50

33 44

30 40

30 40

22 67

30 22

30 30

44 33

11 33

22 33

11 56

8 42

10 30

44 33

11 37

0 40

56 33

4 50

10 30

50 25

4 48

0 30

22 33

19 35

67 22

70 30

23 27

40 30

45 27

10 52

22 33

20 60

had sole access to a computer. They also had the resources of a client database, e-mail, fax, and Internet. However, less Rural Outreach respondents had pedigree drawing software (Table V), and only half of respondents irrespective of location used videoconferencing. A client database was considered to be important to all in the field and was used daily by 90% of all respondents but many found it time-consuming for entering data. A significant number found pedigree drawing software more time-consuming or difficult than hand drawing. The use of pedigree drawing software was regarded by some in Main Unit as a task for the clerical staff as was data entry. For Rural Outreach it was considered by some to be useful for presentations and large pedigrees but hand drawing was used to establish rapport with the client. Some comments


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Table V. Resources (%)

Client database Of those who have it Use daily Use weekly Time-consuming % of total that think it’s very important Pedigree software Of those who have it Use daily Use weekly More time-consuming than hand drawing % of total that think it’s very important Internet Of those who have it Use daily Use weekly Used for information and support groups

Main Unit

Metro Outreach

Rural Outreach

100

100

92

85 6 12 79 93

70 20 40 100 70

55 36 75 80 67

26 35 55 39 91

29 71 71 70 100

38 25 38 50 92

35 45 77

50 50 100

45 27 82

from both Main Unit and Rural Outreach were that it was not user-friendly, it was time-consuming, and they lacked experience in using it. However, it was thought to be an important resource by many in Metro Outreach and Rural Outreach (Table V). The majority of all respondents used e-mail, fax, and the Internet on a daily to weekly basis and felt computers, databases, e-mail, and fax were very important for increasing the effectiveness and efficiency of their service. Videoconferencing received a similar response. However, 23% of respondents were concerned about confidentiality of e-mails and 38% about faxes. The Internet was a major source of information for many. However, textbooks such as Practical Genetic Counseling by Peter Harper and Mendelian Inheritance in Man by Victor McKusick were still widely used in all locations (Table VI). Another major source of up to date information was journals and periodicals. The ability to access mainstream genetic journals on site was severely limited in Rural Outreach as only 8% had on-site access to three or more journals (Table VII). These included Journal of Genetic Counseling, Nature Genetics, and Journal of Medical Genetics. Personal journal subscription was uncommon, particularly in Table VI. Use of Textbooks (% Using Item Per Week)

Practical Genetic Counseling (P. Harper) Mendelian Inheritance in Man Online Mendelian Inheritance in Man General genetic services resources

Main Unit

Metro Outreach

Rural Outreach

60 21 42 55

90 50 70 50

75 33 75 83


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James, Worthington, and Colley Table VII. Journal Access (%)

On-site access to 3 or more genetic journals On-site access to 1–2 journals Subscription to Journal of Genetic Counseling

Main Unit

Metro Outreach

Rural Outreach

64 36 27

60 20 20

8 42 9

Rural Outreach, with the Journal of Genetic Counseling the most popular journal subscribed to by all. When requesting journal articles from off-site libraries the majority of respondents had to wait 7–14 days to receive the article, with the cost being met by the hospital or genetics unit. Some counselors, particularly in outreach, found it time-consuming or difficult to obtain articles through the library and had found other avenues, such as coworkers in the city who would send them articles. PROFESSIONAL DEVELOPMENT Not unexpectedly, it was easier for those in Main Units to have daily contact with their colleagues. Table VIII shows that contact via the phone or e-mail was used to a greater extent by both Metro Outreach and Rural Outreach. The HGSA recommends that counselors should receive 4 hr of supervision per month for counseling and 4 hr for genetics. However, very few counselors were receiving this recommended time, especially in Rural Outreach (Table IX). Also in Rural Outreach the counseling supervision was most likely to be general counseling rather than genetic counseling. Traveling for each supervision session was necessary by the majority of those in Rural Outreach and Metro Outreach. A further 50% of Metro Outreach genetic counselors needed to travel occasionally to another location for medical genetics supervision. Conferences for both the Human Genetics Society of Australasia (HGSA) and Australasian Society of Genetic Counselors (ASGC) were well attended by Table VIII. Contact With Colleagues Daily/Weekly (%)

Geneticists Face to face Phone Fax E-mail Genetic counselors Face to face Phone Fax E-mail

Main Unit

Metro Outreach

Rural Outreach

100 39 15 45

80 90 70 90

0 83 42 67

97 76 39 55

50 100 90 90

0 83 33 67


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Table IX. Supervision (%) Main Unit

Metro Outreach

Rural Outreach

35 38

60 10

8 50

38 38

33 56

18 45

28 38

50 38

30 60

100 87 73

40 56 38

10 22 50

0 8 28

10 44 44

56 63 50

23 17 28

20 11 13

55 45 33

Medical genetics supervision/month 3+ hr 1–2 hr Genetic counseling supervision/month 3+ hr 1–2 hr General counseling supervision/month 3+ hr 1–2 hr Supervisor on site Medical genetics Genetic counseling General counseling Travel for supervision (always) Medical genetics Genetic counseling General counseling Dissatisfaction Medical genetics Genetic counseling General counseling

genetic counselors from all areas, with the vast majority of counselors holding membership to both societies (Table X). DISCUSSION The results of the questionnaire show that the role of genetic counselors varies according to the location and type of unit in which they are situated. Although Table X. Conference and Membership (%)

HGSA conference Annual attendance Biannual attendance ASGC conference Annual attendance Biannual attendance Funding for attendance Full or partial Registration only Presentation required Membership of society HGSA ASGC NSGC

Main Unit

Metro Outreach

Rural Outreach

36 36

40 30

17 75

55 15

10 40

82 18

70 6 42

69 0 50

36 36 36

94 85 30

100 100 30

92 83 18


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most counselors service a population of between 100,000 and 200,000 the area over which the clients are dispersed affects how many access the service. Main Unit and Metro Outreach counselors have a large number of clients in a small area, whereas Rural Outreach has fewer clients in a much greater area. Although there are many similarities between the three main types of service providers the predominant differences related solely to location are in the areas of supervision, resources, and education/promotion. The level of clinical responsibility was also influenced by the experience and accreditation of the counselor. Clinical Responsibility In this study Metro Outreach counselors were more independent of their geneticists and performed many tasks regardless of the type of genetic condition without consultation with a geneticist. Since geneticists are not available on site and metro counselors have a large client load it would seem inevitable that their level of responsibility would be more than other locations where geneticists are more readily available. Conversely, Rural Outreach counselors were more cautious, with the level of involvement and responsibility influenced by the type of condition and a greater need for consultation with a geneticist for approximately half of respondents in many situations. Since the level of training and experience is similar between Metro and Rural Outreach perhaps the lack of up-to-date resources and adequate supervision impacts the Rural Outreach counselors’ confidence in certain situations. It is interesting to note that the level of responsibility of a genetic counselor appears to be similar across the world. Skirton noted that in the United Kingdom 5 years prior to this study some genetic counselors worked autonomously, with their own clinical caseload, as well as with a consultant (Skirton et al., 1997). Skirton et al. (1997) and the National Society of Genetic Counselors (NSGC) professional status survey (Farmer and Chittams, 2000) found similarities in clinical responsibilities to Australasian genetic counselors. For example, the number of patient contacts per counselor in the United States is similar to those in Australia and New Zealand. Adoption of an autonomous caseload by counselors under clinical supervision from a geneticist is an obviously integral part of genetic counseling both in Australia and New Zealand as well as Britain. However, there is acknowledgment here and in other countries that counselor only contact is not appropriate for certain clients, specifically where a dysmorphic syndrome is queried (Skirton et al., 1997). Supervision Getting supervision is what responsible professionals do. By choosing a life as a professional one takes on the obligation to obtain supervision and consultation as a core responsibility regardless of how busy we are, our sense of shyness, embarrassment, shame, or fear of


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being found to be inadequate, incompetent, or foolish. None of these excuses obviates our professional responsibility. (Kessler, 2000)

The general lack of appropriate supervision is of great concern given that the majority of counselors in all settings are undergoing training toward accreditation and supervision is a mandatory requirement for this process. The dissatisfaction of counselors with supervision implies that they would like it to be greater in quantity and/or of a higher quality. Rural Outreach counselors’ dissatisfaction with the level of their genetic counseling supervision may be related to a lack of on-site supervisors and limited time allocated for supervision. This trend is also seen with medical genetics supervision and may be related to the lack of a geneticist on site to answer immediate questions and have impromptu discussions. The recommendations by the HGSA regarding supervision specify geneticist supervision but it is not mandatory to have a genetic counselor as a supervisor (HGSA, 1999b). The Guidelines for Training in Genetic Counseling (HGSA, 2002) do not stipulate a genetic counselor as supervisor either. If supervision by a genetic counselor is not seen as important by the accrediting organization it can be difficult for counselors to justify and access such support. Articles in the past few years have highlighted the importance of supervision for the growth and development of genetic counselors (Kennedy 2000a,b; Weil, 2000). Feelings of being alone, rushed, overworked, and undersupported are common among genetic counselors (Weil, 2000). These feelings of isolation, the desire for professional support, and the need for time to slow down and process thoughts and emotions have been found to be important in motivating the establishment of supervision groups (Weil, 2000). Unfortunately for counselors in an outreach setting it can be difficult to obtain any counseling supervision. However, supervision should be given a priority, as rural counselors clearly have a need for discussion and to obtain feedback on their cases from other genetic counselors. As Kennedy explains, peer supervision groups can afford genetic counselors a notable opportunity to bolster self-confidence and self-esteem by their observation of and interaction with peers; by sharing successes and mistakes; by mutually exploring their work and validating one another (Kennedy, 2000a). There needs to be a reevaluation of how supervision is best provided particularly for the Rural Outreach counselors since the vast majority of those counselors in outreach are still training and thus have the least amount of clinical experience. They also have the least amount of supervision, the least access to journals and genetic counseling literature, and are understandably the least satisfied with the amount of supervision they receive. The inadequate access to suitable supervision and resources can create difficulties in meeting the requirements for supervision and completion of the 20 in-depth case discussions in order to obtain Part 2 and full accreditation. The question of whether traditional face-to-face supervision be supplemented with videoconferencing and telephone supervision needs to be further explored. We have recently established a monthly case discussion group in


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Queensland for outreach counselors using videoconferencing to link up genetic counselors thousands of kilometers apart. We plan to continue exploring the potential of videoconferencing as this method will allow for supervision anywhere there is a willingness to establish it and a phone line. This may perhaps provide an avenue for supervision for genetic counselors practicing in an isolated setting. Professional Accreditation The work settings in Australasia are similar to those in the United Kingdom and the United States and concerns regarding supervision and qualifications have been raised in all three countries (Farmer and Chittams, 2000; Williams et al., 2001). There is similarity between the Australasian model of health care provision and the UK model as genetic counseling is based primarily in the public health system, whereas in the United States it is based in University Medical Centers, and a substantial number in Private hospitals. The actual process of accreditation however seems to be quite different in Australia (HGSA, 2002) to either country but is actively encouraged and undertaken by the vast majority of counselors. It is encouraging to see that 89% of respondent in the three main areas were in training or certified as a genetic counselor. This is comparable with the accreditation rates in the United States (Farmer and Chittams, 2000). Although the methods of accreditation vary somewhat it is encouraging to see that across the world there is a commitment to maintaining a standard and accountability within the genetic counseling profession. Accreditation in Australasia is in theory voluntary, but it is encouraged and is virtually essential in the ability to obtain employment. The recognition of genetic counseling as a profession requiring a postgraduate qualification can only help to maintain its credibility. For outreach positions it is recommended that the main unit that supports them has a responsibility to supply appropriate resources, supervision, and support to enable the outreach counselors to provide a quality service to their clients and pursue accreditation (HGSA, 1999b). It appears that this does not occur across the board. This raises the concern that outreach counselors may have difficulty in remaining up to date, thus highlighting the importance of good communication between the outreach and main units. However, it is encouraging to see that outreach counselors are pursuing accreditation despite the lack of resources to assist them. Resources An essential requirement for supervision and accreditation is good resources and support within the unit and location. For outreach counselors the HGSA recommends a buddy system with a colleague in a main unit (HGSA, 1999a). In theory this appears to be a good solution. However, when put into practice the


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reality is very different. Main units are very busy as they have a high workload. The role of obtaining articles could be better provided by good administrative support. But unfortunately responses to the questionnaire show that for outreach counselors the majority of the time not spent on genetic counseling activities is spent in administrative duties, suggesting limited administrative support. The HGSA recommends that a full-time outreach genetic counsellor, covering a population of 150,000 or less should have a 0.5 Full-Time Equivalent administration support position (HGSA, 1999a). Most outreach counselors who responded have a population that is 50–100% greater than that and they do not have any defined administration support. This suggests that outreach counselors have many demands on their time that distract them from their core business. These concerns are in concordance with those raised by Skirton et al. (1997). Nearly half of the British genetic counselors/nurses stated they had insufficient time to perform their primary role of providing client consultations adequately, with the most common reason being inappropriate or inadequate staffing within the department, which meant secretarial or clerical work was being done by nurses/counselors. In Australia, Queensland and NSW have the largest number of outreach counselors—comprising 11 of the 12 who responded to the questionnaire. Queensland Rural Outreach counselors have on average 8 hr of administration support per week, and none of the NSW Rural Outreach has any defined administration support. Outreach Australian and NZ demographics necessitated the development of outreach genetic counselors. The rural outreach genetic counseling position in Australasia although not unique in the world, is an essential part of an equitable genetics service in a large country with a small and widespread population. The configuration of the outreach program has led to the realization through experience that genetic counselors can and do work autonomously, in collaboration with a geneticist, and provide a much-needed service to the community. The benefits of an outreach program have also been documented in Canada (Lowry and Bowen, 1990), which has a similar population distribution to Australia. Therefore, the findings in this paper may be of interest to Canadian genetic counselors and others in countries where small populations are spread over a wide area and/or genetic counselors find themselves working in isolation. Unfortunately outreach counselors are to a certain extent out of sight out of mind. Employers and main units should not be complacent about the support and resources that outreach counselors require. It is blatantly not adequate. The isolation and lack of support that is felt in outreach can lead to dissatisfaction with the job and poor staff retention. It is already difficult to retain medical staff in rural positions in Australia and although there is strong competition for genetic


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counseling positions, rural outreach genetic counseling is currently viewed as the poor country cousin with little resources or assistance. Professional Development Regularly attending conferences is an integral part of maintaining knowledge in a field that is rapidly changing. Lack of funding does not deter many people from attending conferences although it is likely they can only afford to attend one conference a year, with the ASGC getting preference from Rural Outreach counselors. Many Rural Outreach counselors are part of a local health team but are often the only genetic counselor for that hospital or area and conferences may be their only face-to-face contact with other genetic counselors. The support from an employer seems to be marginally better in Australia than in the United States (Farmer and Chittams, 2000), although it shows the commitment to the profession by Rural Outreach counselors who receive no more funding than those in metro and main units but have the highest percentage attendance at the HGSA and ASGC conferences. This perhaps reflects their higher need for peer support and supervision. Promotion and Education Providing an educational service and promotion of genetics are considered part of the genetics service role. It is interesting to note that the type of education and promotional activities carried out in Australasia are similar to those carried out in the United States (Farmer and Chittams, 2000). This supports the importance of this aspect of the genetic counseling profession. Rural Outreach counselors frequently provide education and promotional activities to a wide variety of groups. This service is perhaps made possible by their smaller client load. Conversely counselors in main units, with their high clinic load have less time for contact with other services such as women’s health and breast cancer screening services. Perhaps more time should be allocated for better liaison with these and similar services, as they are often the only health professionals that clients see on a regular basis. For example, the breast screening services can play a role in educating clients on the importance of family history. This can be done in conjunction with genetic counselors for a comprehensive service. Limitations of Study The questionnaire was in parts complex and did not easily allow for statistical analysis of the data. If the study were to be repeated, altering and simplifying the questionnaire to allow statistical analysis would be recommended. This may also


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contribute to a higher response rate from all areas. However, the large difference in number of respondents from main units compared with outreach was an unavoidable limitation of this study as currently in most states of Australia and in New Zealand there are many more counselors in a main genetics unit than in an outreach setting. Delineation of clinical responsibility with regards to specific conditions or situations may have provided some useful data as many respondents indicated their clinical involvement was dependent on the genetic condition. Whether there are differences between each setting with regards to specific conditions and the counselors’ involvement could be the basis for further study. SUMMARY The information currently available about genetic counselors and their needs in the workplace is variable and does not differentiate in any detail the specific needs of genetic counselors working in different locations. This can lead to an assumption that what works in one location will work in others. Our survey found that the different practice areas are not similar and highlights some of the issues for all counselors and specifically those in outreach that have not been documented previously. When maintaining current genetic counseling positions and developing new ones the two top priorities should be the development of adequate peer support and supervision, and access to information such as journals, textbooks, and online services. Information technology has a large part to play in the job satisfaction of currently employed genetic counselors and we predict it will be increasingly important in the development of the role of future genetic counselors. Perhaps an evaluation of the benefits of an Internet-based support system is needed. The feasibility of specific chat rooms or listserv could be investigated. Some counselors are already benefiting from new technology such as videoconferencing. It is a tool that is under utilized and since genetic counseling is a profession where face-to-face interaction is the main activity it is a potentially useful resource that should be further assessed. The lack of support and resources that Rural Outreach counselors receive are major areas of concern highlighted by this survey. Outreach counselors have the least amount of contact with a geneticist and therefore require expanded on-site reference sources and supports. This is currently not the case, and therefore, we feel a review of the guidelines and recommendations by the professional bodies that developed the guidelines for the practice of genetic counseling and regulate genetic counseling training in Australia, namely the HGSA and ASGC, is required. Another area highlighted by this study is the high client load carried by Metro Outreach counselors and the time available for education and promotion in both main and metro units. A review of the nature and quantity of the work of the


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counselors in these types of units is required to ensure a reasonable level of job satisfaction and to prevent possible deleterious effects including burnout. As the profession of genetic counseling continues to develop in Australasia it is important that there is regular review and planning regarding the role and resources of the different types of genetic counselors. Perhaps a biannual questionnaire that can correlate with the NSGC survey may be useful to track trends and changes in the genetic counseling profession both in Australasia and globally. It has been said often and by many that it is a new profession that is changing and growing and thus the more we can make informed decisions about how the profession develops the greater the benefit for both clients and counselors worldwide. ACKNOWLEDGMENT We thank all the genetic counselors and associate genetic counselors who returned the questionnaire. REFERENCES Farmer, J., & Chittams, J. (2000). Professional status survey. Prospect Genet Couns Suppl, 22(4), S1–S12. HGSA. (1999a). Guidelines for the Structure of Clinical Genetics Units in Australasia. Available from www.hgsa.com.au HGSA. (1999b). Guidelines for the Practice of Genetic Counselling. Available from www.hgsa.com.au HGSA. (2002). Policies: Training Guidelines of HGSA. Guidelines for Training in Genetic Counselling. Available from www.hgsa.com.au Kennedy, A. L. (2000a). Supervision for practicing genetic counselors: An overview of models. J Genet Couns, 9(5), 379–390. Kennedy, A. L. (2000b). A leader-led supervision group as a model for practicing genetic counselors. J Genet Couns, 9(5), 391–397. Kessler, S. (2000). Closing thoughts on supervision. J Genet Couns, 9(5), 431–434. Lowry, R. B., & Bowen, P. (1990). “The Alberta Hereditary Diseases Program: A regional model for delivery of genetics.” Can Med Assoc J, 142(3), 228–232. Skirton, H., Barnes, C., Curtis, G., & Walford-Moore, J. (1997). The role and practice of the genetic nurse: Report of the AGNC Working Party. J Med Genet, 34(2), 141–147. Weil, J. (2000). Introduction: Supervision for practicing genetic counselors. J Genet Couns, 9(5), 375–378. Williams, J., Skirton, H., Reed, D., Johnson, M., Maas, M., & Dack-Hirsch, S. (2001). Genetic counseling outcomes validation by genetic nurses in the UK and US. J Nurs Scholarsh, 33(4), 369–374. World Health Organization. (1972). Genetic disorders: Prevention, treatment and rehabilitation (Report of a WHO Scientific Group, WHO Technical Report Series No. 494). Geneva: WHO.

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