Barriers to access: results from focus groups to identify genetic service needs in the community.
OBJECTIVE
In efforts to prepare for implications of genomic advances, a needs assessment was undertaken from 2000 to 2002 by the Michigan Department of Community Health to develop a comprehensive state plan for genetic services. This paper reports on the access barriers to genetic services identified from focus groups conducted with members of the community and genetic service providers.


METHODS
Included in this study were the following five target groups: a sickle cell anemia parent support group, a Native American student group, parents of children with birth defects or other special health care needs, adults with genetic conditions, and genetic service providers from the statewide genetic counselors' association. Discussions of all groups were audio taped, transcribed and analyzed using content analysis.


RESULTS
Individual barriers to access identified included lack of awareness of personal risk, lack of knowledge of genetic services and resources, and lack of trust/fear of discrimination. Institutional barriers to access identified included provider lack of knowledge and awareness of genetic services, lack of workforce, coordination of care, cost and insurance, and location from services.


CONCLUSIONS
Barriers to access cut across overlapping dimensions and overcoming these barriers will require solutions that target multiple dimensions in order to be effective.
Beene-Harris
Rosalyn Y
RY
Michigan Department of Community Health, Lansing, MI 48913, USA. BeeneR@michigan.gov
Wang
Catharine
C
Bach
Janice V
JV
D000328:Adult; D003153:Community Health Services; D005260:Female; D017144:Focus Groups; D033142:Genetic Services; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D014481:United States