Harris, H.; Harris, R.; Julian-Reynier, C.; Kristoffersson, U.; Nippert, I.;
Schmidtke, J.; Ten Kate, LP, on behalf of the GenEd research group.
The study: Genetics education: Improving non-genetics health professionals’
understanding of genetic testing (GenEd) was carried out from December 2001 until
June 2005 in five European countries: France, Germany, The Netherlands, Sweden and
the United Kingdom. The major objective of the study was to assess priority needs for
genetics education for non-genetics health professionals. This objective was met
by conducting:
- a survey in each participating country of such current policies and practices
that exist for the education and training of primary care providers and other
non-genetics health professionals in genetics;
- an empirical assessment of educational needs and priority topics for education
in genetics among primary care providers and other non-genetics health
professionals in genetics.
The empirical assessment was done by a postal survey with a self-administered
questionnaire.
The questionnaire was sent to general practitioners (GPs), midwives,
obstetricians/gynaecologists and paediatricians. The samples were either
randomly selected from representative databases of the practitioners (France, UK,
The Netherlands, Sweden) or from professional organisations (Germany). An
overview over the sample size, the response rate and the total amount of the study
population can be found in table 1.
The questionnaire for the midwives was only mailed out in The Netherlands,
Sweden and the UK
The study was funded by the EU 5th Framework Programme (QLG4-CT-2001-30216).
The members of the consortium responsible for the study can be found in table 2.
We present here the questionnaires for the GPs,
obstetricians/gynaecologists and paediatricians generated by a consortium of
European experts including clinical geneticists, general practitioners, nurses
and midwives and representatives of patient organisations and social scientists.
Practicing GPs, obstetricians/gynaecologists and paediatricians were consulted
about the content.
The complete questionnaire includes 122 items. The items relate to: Self-reported
education in genetics, how often genetic procedures and tests were carried out in
practice, confidence in procedures that may require genetic knowledge and
educational priorities in clinical genetics.
Data from this study have been published so far in:
Published articles:
- Challen, K.; Harris, H.; Julian-Reynier, C.; ten Kate, L.P.; Kristoffersson,
U.; Nippert, I.; Schmidtke, J.; Benjamin, C.; Harris, R.:
Genetic Education and nongenetic health professionals: Educational
providers and curricula in Europe. Genetics in Medicine 2005;
Vol. 7, No. 5, 302-310.
- Challen, K.; Harris, H.; Benjamin, C.M.; Harris, R.:
Genetics Teaching for Non-Geneticists Health Care Professionals in
the UK. Community Genetics 2006; Vol. 9, No. 7, 251-259.
- Harris, R.; Challen, K.; Benjamin, C.; Harris, H.:
Genetic Education for Non- Geneticist Health
Professionals. Community Genetics 2006; Vol. 9, No. 7,
224-226.
- Henriksson, K.; Kristoffersson, U.:
Education in Medical Genetics for Non-Genetic Health Care Providers
in Sweden. Community Genetics 2006; Vol. 9, No. 7, 240-245.
- Julian-Reynier, C.; Arnaud, S.: France:
Genetics Education for Non-Genetics Health Care Providers
Community Genetics 2006; Vol. 9, No. 7, 227-234.
- Plass, A.M.C.; Baars, M.J.H.; Beemer, F. A.; ten Kate, L.P.:
Genetics Education for Non-Genetic Health Care Professionals in the
Netherlands (2002). Community Genetics 2006; Vol. 9, No. 7,
246-250.
- Schmidtke, J.; Paul, Y.; Nippert, I.:
Education in Medical Genetics for Physicians: Germany.
Community Genetics 2006; Vol. 9, No. 7, 235-238.
- Kristoffersson, U.:
Brister I genetisk kunskap I vården? (Lack of clinical genetic competence
in health care?)
In: Görman, u.; Hermerén, G.; Andren, CG (eds): att forma vår framtid.
Vilken framtida människa bör den nya bioteknologin leda till? (To form our
future. What future human should the new biothechnology lead to?). Historiska
media, Lund, 2007, pp. 109-118.
Articles accepted for publication:
- Benjamin, CM; Anionwu, EN; Kristoffersson, U; Ten Kate, LP; Plass, AM; Nippert,
I.; Julian-Reynier, C.; Harris, H.; Schmidtke, J.; Challen, K.; Calefato,
J-M;, Waterman, C.; Powell, E.; Harris, R.:
Educational Priorities and Current Involvement in Genetic Practice:
a Survey of Midwives in the Netherlands, UK and Sweden.
Midwifery; in press.
- Calefato, J.-M.; Nippert, I.; Harris, HJ; Kristoffersson, U.; Schmidtke, J.;
Ten Kate LP; Anionwu, E.; Benjamin, C.; Challen; K.; Plass, AM; Harris, R.,
Julian-Reynier, C.:
Assessing Educational Priorities in Genetics for GPs and Specialists
in 5 Countries: Factor Structure of the Genetic Educational Priorities
(Gen-EP) Scale. Genetics in Medicine; in press.
- Julian-Reynier, C.; Nippert, I.; Calefato J.-M.; Kristoffersson, U.;
Schmidtke, J.; Ten Kate LP; Anionwu, E.; Benjamin, C.; Challen; K.; Plass, AM;
Harris, R.:
Genetics in Clinical Practice: General Practitioners’ Educational
Priorities in European Countries. Genetics in Medicine; in
press.
Articles submitted for publication:
- Plass, AM; Baars, MJH; Cornel, MC; Julian-Reynier, C.; Nippert, I.; Harris, H.;
Kristoffersson, U.; Schmidtke, J.; Anionwu, E.; Benjamin, C.; Challen, K.;
Harris, R.; Ten Kate, LP:
Testing the Children: Do Non-Genetic Health-Care Providers Differ in
their Decision to Advise Genetic Pre-Symptomatic Testing on Minors? A
study in Five Countries in the EU.
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