Results of a Licensure Needs Assessment Survey of Michigan Genetic Counselors

1. Results of a Licensure Needs Assessment Survey of Michigan Genetic Counselors Jessica Mester, B.S. MAGiC Meeting, March 9th, 2005

2. What is a Needs Assessment? • Important first step • Literally, assesses a need in a community regarding a specific issue

3. Why Perform a Needs Assessment? • Discover how Michigan genetic counselors and Ph.D. Medical Geneticists feel about licensure • Uncover any misconceptions about licensure • Gather opinions on “controversial issues” (i.e. eligibility, supervision, ordering tests)

4. Survey Design • Summer 2004: Contacted leaders of licensure efforts in other states listed on NSGC website • July 2004: Obtained sample surveys from Texas and California Licensure Working Groups

5. Survey Design • Gathered input from a variety of sources: • Michigan Licensure Working Group • NSGC Licensure Subcommittee • U of M Research Committee • Several revisions of survey instrument • Reviewed and approved by IRBMED at the University of Michigan

6. Survey Methodology • 36 questions long • Sent by e-mail to 66 individuals in Michigan • 63 genetic counselors, 3 Ph.D. Medical Geneticists • 1 e-mail rejected, 3 GCs moved to other states • Received responses from 41 individuals • 38 genetic counselors, 3 Ph.D. Medical Geneticists • 38 by e-mail, 3 by postal mail

7. Study Limitations • Response rate: at least 66% (41/62) within a 3 week time period • Ascertainment bias? • Small sample sizes → difficulty determining statistical significance • only 3 Ph.D. Medical Geneticists surveyed

8. Data analysis • Statistical significance: p<0.05 • Trends: p<0.10 • Used Chi-Square analysis and logistic regression as implemented in SPSS v. 13.0

9. Interpretation • Unless specifically noted, there were no statistically significant differences between demographic groups (i.e. board-certified vs. board-eligible counselors, clinical vs. other roles, etc.)

10. Results: Overview • Section I: Demographic Information • Section III: Thoughts on Licensure • Section II: Language in a Potential Bill

11. Certification Status • 28 ABGC/ABMG-certified Genetic Counselors (GCs) • 1 not currently in practice; data not included • 10 ABGC-eligible GCs • All planning to take next board exam • 3 ABMG-certified Ph.D. Medical Geneticists (MGs)

12. Years Employed %

13. Gender %

14. Highest academic degree %

15. Primary Role N=26 N=5 N=3 N=2 N=1

16. Subspecialties (for Clinical GCs) N

17. Primary Employment Setting %

18. Outreach Participation %

19. Primary Supervisor N

20. Results: Overview • Section I: Demographic Information • Section III: Thoughts on Licensure • Section II: Language in a Potential Bill

21. Q31: Overall thoughts about licensure N=19 N=19 N=1 N=1

22. Groupwise Comparisons • Board-certified counselors were about six times more likely than board-eligible counselors to strongly support licensure (vs. support) [p=0.044, CI=1.049-34.317] • Cancer counselors were significantly more likely to strongly support licensure (vs. support) [p=0.026, OR=12.9]

23. Q32: Reasons to support • “I feel it is necessary to legally ensure that only individuals with the appropriate education are providing the public with information about their genetic risks.” • “I feel it is necessary to have an enforceable method of penalization for those who violate ethical standards of practice.” • “I believe it is necessary to have a legal definition for who may and may not use the job title ‘genetic counselor’”.

24. Q32: Reasons to support • “I feel it is important for genetic counseling to be ‘in-line’ with other healthcare professions that require a license.” • “I believe licensure would further legitimize genetic counseling as a distinct allied healthcare profession.” • “I believe licensure will protect genetic counselors from litigation.” • Two spaces to write in other responses.

25. 1st strongest: “Appropriate education” (20/37) “Legitimize GC as distinct HC prof.” (10/37) “Imp. for GC to be ‘in-line’” (4/37) “Legal definition for GC job title” (3/37) 2nd strongest: Tie: “Legal definition” and “Legitimize” (10/37) Tie: “Appropriate education” and “In-line” (7/37) “Penalization for ethical violations” (2/37) Other: “for billing purposes” (1/37) Q32: Reasons to support

26. Q32: Reasons to support N

27. Q32: Significant Trends • Those practicing adult genetics and those supervised by PhD Medical Geneticists all selected “appropriate education” as either their first or second choice • No person supervised by a non-geneticist subspecialty physician chose “job title” as either their first or second choice [p=0.033]

28. Q32: Significant Trends • Board-eligible counselors were more likely to select “further legitimize” than board-certified counselors [p=0.009, OR=13.0] • Those working 5 or more years were more likely to select “in-line” [p=0.041, OR=6.86] • Cancer and Adult Genetics counselors were less likely to select “further legitimize” than others [p=0.009, OR=18.0 and p=0.048, OR=12.86 respectively]

29. Q29: Need for GC to be licensed? N=33 N=7

30. Q30a: Public protection N=30 N=8 N=2

31. Q30b: Further legitimize N=39 N=1

32. Q30c: Lawsuits N=18 N=21 N=1

33. Q30d: Practice independently N=13 N=26

34. Q34-35: Harm caused by inaccurate information • Q34: From a genetic counselor? • 3 of 39 (7.7%) answered “Yes” • Q35: From another healthcare worker? • 21 of 38 (55.3%) answered “Yes” • “I clean up A LOT of messes, especially with VUS in BRCA ½. No patient has DIED, but the psychosocial impact is something difficult to measure.”

35. Results: Overview • Section I: Demographic Information • Section III: Thoughts on Licensure • Section II: Language in a Potential Bill

36. Q11: Who should be eligible to obtain a GC license? %

37. Q11: GCs compared to MGs %

38. Q12: What GC roles should require a license? %

39. Q12 Trends • Those whose primary role is teaching were less likely to say that GCs in a teaching role should require a license than those in other primary roles. p=0.096 OR=10.3

40. Q12 Trends %

41. N=1 Q13: What kind of exam? Other responses: “If board certified- no exam” “The Michigan licensure board should be responsible for a licensing examination for those who are waiting for the ABGC certification exam” “ACMG boards” “Above should read ‘ABMG OR ABGC certification examination…” N=37 N=4

42. Q14: Continuing education requirements? Other response: “Not sure what they should be, but individuals in specialized fields may not be able/allowed to attend enough educational activities to fulfill ABCG [sic] requirements.” N=36 N=1

43. Q15: Need for temporary licenses? N=30 N=6 N=3

44. Q15: Comparison between groups %

45. Q16: Who should have a temporary license? %

46. Q17: Limit on temporary licenses? Other response: “I think that there is a question missing here – this is assuming that ABGC is the key” N=28 N=1

47. Q22: Supervision required for fully licensed GCs? N=11 N=17 N=9

48. Q22: BC compared to BE GCs %

49. Q23: Who may supervise? N

50. Q24: Additional sup. for GCs with temp. licenses? N=23 N=9 N=5