Barriers to Access: Results from Focus Groups to Identify Genetic Service Needs in the Community

Vol. 10, No. 1, 2007

Free Abstract Article (Fulltext) Article (PDF 111 KB)

Original Paper

Barriers to Access: Results from Focus Groups to Identify Genetic Service Needs in the Community
Rosalyn Y. Beene-Harris^a, Catharine Wang^{b, c}, Janice V. Bach^a

^aMichigan Department of Community Health, Lansing, Mich.,
^bDepartment of Health Behavior and Health Education, and
^cMichigan Center for Genomics and Public Health, University of Michigan School of Public Health, Ann Arbor, Mich., USA

Address of Corresponding Author

Community Genet 2007;10:10-18 (DOI: 10.1159/000096275)

Key Words

Needs assessment
Genetic services
Genomic medicine

Abstract

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.

Author Contacts

Rosalyn Beene-Harris, MPH
Genetics Health Educator, Michigan Department of Community Health
PO Box 30195, 201 Townsend Street, 4th floor
Lansing, MI 48913 (USA)
Tel. +1 517 335 8110, Fax +1 517 335 9790, E-Mail BeeneR@michigan.gov

Article Information

Number of Print Pages : 9
Number of Figures : 0, Number of Tables : 1, Number of References : 23

Medline Abstract (ID 17167245)

Download Citation

Public Health Genomics
is the continuation of
Community Genetics

For non-native English speakers and international authors who would like assistance with their writing before submission, we suggest American Journal Experts for their scientific editing service.