Providers' knowledge of genetics: A survey of 5915 individuals and families with genetic conditions.
OBJECTIVE
Individuals affected by genetic conditions are increasingly likely to seek information about inheritance and risk factors from their primary care physicians rather than a geneticist, but several studies suggest that few health care providers are capable of fulfilling that role or are comfortable doing so. Acknowledging that the adoption of new genetics knowledge and technologies is often patient-driven, we asked affected individuals and family members about their experiences in encounters with a variety of nongenetics-trained health care providers.


METHODS
Staff at the National Coalition for Health Professional Education in Genetics, the Genetic Alliance, and a University of Maryland graduate student in genetic counseling drafted a web-based survey. We recruited study participants from the Genetic Alliance, and a total of 5915 respondents completed the questionnaire between December 2004 and August 2005.


RESULTS
Overall, 64% of respondents reported receiving no genetics education materials from the provider type named most important in the management of the condition in the family. We present knowledge ratings for various provider types and themes emerging from written descriptions of positive and disappointing experiences.


CONCLUSIONS
We discuss the implications of these and other results for continuing genetics education and for clinical practice.
Harvey
Erin K
EK
National Coalition for Health Professional Education in Genetics, Lutherville, Maryland 21093, USA. ekharvey@comcast.net
Fogel
Chana E
CE
Peyrot
Mark
M
Christensen
Kurt D
KD
Terry
Sharon F
SF
McInerney
Joseph D
JD
D005817:Genetic Counseling / Q000706:statistics & numerical data*; D005826:Genetics, Medical / Q000193:education*; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000523:psychology / Q000706:statistics & numerical data*; D006801:Humans; D020407:Internet; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires