Genetic nurses/counsellors in
The Netherlands, a Dutch PCR
(Particular Chain Reaction)
Conny van der Meer, RN, Hanne Meijers Heijboer, MD PhD
Erasmus MC, Department of Clinical Genetics, Rotterdam, The Netherlands
c.vandermeer@erasmusmc.nl
The Netherlands - Europe
Reasons for increase
 Increase in the isolation and identification of
disease genes
 Identification of the genetic cause of common
diseases like breast cancer and colorectal
cancer
 Increase in access to testing, technically as
well as financially
Department of Clinical Genetics in
University Hospitals
Future training programme
Will be developed on master's level but not yet defined
 Nurse Practitioner?
 Physician Assistant?
 Health counsellor/genetic counsellor?
 2 years of education: theoretical and practical skills
 600 hours communication/counselling skills
 1000 hours human and biomedical genetics,
genetic disorders, ethical en legal issues, etc.
Consequences



Genetic nurses/counsellors in The
Netherlands: a vital link in the chain!
Numbers of counselling in the
Netherlands
# of genetic counsellors
Total #
# of cancer
# of counselling
14000
10000
45
Background
30
25
Main tasks
20

15
10
5
1996
2000
2004



Year
2000
2000
2001
2002
2003
Cancer counselling is 35-38% of total
Clinical Genetics in The Netherlands
2004
Increase since 1993, local situation
 8 departments of clinical genetics
 > 100 out-patient clinics
Year
 68 clinical geneticists (~ half part-time)
 32 clinical geneticists in training
 16 psychologists/social workers
Numbers of counselling
Department of Clinical Genetics Rotterdam
2500
 27 registered genetic counsellors
 18 genetic counsellors in training
2000
1500
1000
500
0
1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003
Total
718
876
942
Cancer
100
155
250
1080 1243 1539 1851 1962 1793 1957 2076
367
600
580
600
752
724
966
996
Year
Rotterdam region
 300% increase since 1993 in total numbers of
counselling
 Cancer grows from 14% in 1993 to 48% in 2004
24 nurses
21 paramedical such as: research analyst, biologist,
cytogeneticist, dietician, etc.
35
1993
Number
Genetic counsellors in The Netherlands
40
0
6000
Established in 2002
2004: 45 (associate) members


50
18000
Dutch Association of Genetic Counsellors
(NVGC)
Awareness: need of additional appropriately
trained genetics professionals beside clinical
geneticists
Government policy: shifting of tasks
Introduction of new professionals like genetic
counsellors and Nurse Practitioners
Counselling (under responsibility of clinical
geneticist)
Assist clinical geneticist
Assist in research projects
Provide education to patient groups, other
professionals like nurses, G.P.’s etc.
Genetic counselling of



Cancer: new families, presymptomatic testing
Known chromosomal rearrangements in families
Monogenetic disorders like: Fragile-X, Duchenne
dystrophy, dystrophia myotonica, Cystic Fibrosis,
SMA, NF1, hemochromatosis etc.
Promotes the interests of its members and clinical
genetics by
 Providing a forum of education
 Providing support for professionals in the field
 Representing the views of the profession
 Prescribing good standards of clinical practice
Committees
 Education
 Accreditation
More information: www.nvgc.info
Need for international collaboration to





Exchange knowledge and skills
Strive to achieve the same (master's) level
Gain international perspective and foster links
Create opportunities for student and faculty
exchange
Co-ordinate policy
Part of the genetic nurses/counsellors
Rotterdam
Certification
National training programme (2 years)
 56 hours theoretical training in genetics (national)
 21 hours training in communication skills (national)
 On the job theoretical and practical training
(supervision by a clinical geneticist)
 3 weeks practical: DNA-lab, pre- and postnatal
cytogenetic lab
 1 research project, article or essay
 Highly recommended: 6 day course in Italy;
'Genetic Counselling in Practice'
 6 successful assessments required
Re-certification


120 hours continuing education per 5 years
Working as a genetic counsellor: at least 50% FTE
© C.A. van der Meer, october 2004