Focus Group Summary

In 2001, a focus group of social workers, teachers, and human and health service workers from an FAS task force participated in a survey assessment that evaluated their knowledge of: genetic services in North Dakota and how it impacted their practice; the Human Genome Project and its implications; awareness of how to access genetic services in North Dakota; what kinds of genetics information would be helpful in their practice; and how they would like to receive that information.

As to their knowledge of what genetic services included, 70% of the respondents stated that birth defects surveillance, preconception counseling and research were the major components of genetic services. Seventy-four percent of those surveyed stated prenatal counseling was a significant part of genetic services as well.

In responding to the question "How does genetics impact your practice": social workers answered: information, referral, education and long term future; health and human service workers responded with prevention, education, treatment, and the financial impact of genetics; whereas teachers left the question blank , were unsure, or related the question to FAS.

Approximately 50% of respondents were aware of the Human Genome Project and most of those were the health and human service workers. Their responses to the impact of the Project on their practices included ethical implications, changes in diagnosis, testing and treatments of disease, as well as delivery of services. However, most social workers and teachers were unaware of the Project or how the information could be applied to their area of expertise.

In terms of awareness of genetic services available in North Dakota and how to access them, most health and human service workers responded positively to both questions. Social workers were aware of services but not how to access them. Teachers, on the other hand, were neither aware of services nor how to access them.

When asked what kinds of information would be helpful to your practice, teachers were unsure other than teaching techniques for FAS. Social workers wanted more information on access, how to make referrals and more information about genetics generally, whereas the health and human services workers wanted more information on a wide variety of genetic topics from clinic and referral information to information on specific disorders, role of public health, and research. Most respondents stated they would like to learn more about genetic services through pamphlets/brochures, fact sheets, and web sites as well as workshops.

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Survey Distributed by Division of Medical Genetics, Grand Forks, (701)777.4276

What is your understanding about what genetic services might include?

___ Birth Defects surveillance ___ Prenatal counseling ___ Gene testing

___ Preconception counseling ___ Newborn screening ___ Research

___ Outreach into state ___ Fetal Alcohol Syndrome evaluation

___ Birth Defects clinics ___ Clinical genetics clinics

How do you think genetics impacts (social work) services?

Have you heard of the Human Genome Project? YES NO

If yes, how do you think the information gained from the Human Genome Project impacts the health and human service professional fields?

What kinds of genetics information would be helpful to your practice?

Are you aware genetics services are available in North Dakota? YES NO

Are you aware of how to access genetic services in North Dakota? YES NO

Please tell us how you would want to learn more about genetics and genetic services in North Dakota.

___ Workshop ___ Pamphlets/brochures ___ Web site list

___ Fact sheet ___ Through other health professionals

___ Being involved on committees ___ Conference call ___ Newsletter

___ Having a genetic services representative at your own meetings

___ Through your personal healthcare provider ___ Other (explain, please)