Genetic Education Needs

Evaluation (GENE) Project

2

Project Goals1. Work together with local organizations to

identify genetic informational needs for African American and other underserved communities

2. Work with community members to identify key genetic educational issues

3. Bring community organizations together with national and state genetic organizations to develop strategies for educating African Americans and others from underserved communities

4. Encourage individuals from underserved communities to participate in issues that relate to genetic public health policies

Community Liaisons

Flint FocusGroup

LansingFocus

Groups

GENEPROJECT

Michigan Demonstration

GENEPROJECT

Michigan Demonstration

Dialogue Guides

Town HallMeetings

Flint DialogueGroups

LansingDialogueGroups

Community Dialogue Process

Demographic Information

• Gender– Female 69%– Male 31%

• Educational– College/professional

degrees 52%– Some college 33%– Grade/High School 15%

• Age Distribution– 31 to 40 24%– Over 60 22%

• Employment Status– Working fulltime 50%– Working part-time 17%– Retired 18%– Unemployed 15%

What “Genetics” Means• Study of genes, chromosomes, DNA• Heredity, family traits• Medical conditions or diseases• Children born with birth defects• Environment, science• Study of culture• Genetically altered food• Genetic testing

What “Genetics” Means

“I think of my culture. Where we come from, who we are, where we were born and the race that we belong to?”

“I guess I think about how will this [genetic] testing be used, the results? Will everyone benefit from the results or is it just for a select few?”

What Community Needs To Know

• Accurate genetic definitions

• Impact of genetics on heredity and family traits

• Issues concerning genetic research

• Ethical and social research issues

What Community Needs To Know

“It might sound kind of strange, …scary, when you hear things that it is not in the norm, you kind of get [scared] thinking… is something wrong with me? When you hear the word, genetics, sometimes you get [scared]. Especially when you don’t know the true meaning of it, you understand”

Impact of Genetics on Heredity and Family Traits

• Information about inherited diseases

• Family health histories

• Incomplete family health histories

• Birth defects and impact on children

• Impact on marriage partners

• Lifestyle and behavior risks

Perceptions of Inherited Diseases“The first thing that you will think is “Oh my

God” do I have it? Am I going to have it, will my children have it? Is it hereditary?… .”

“I went to the dentist and he was telling me that I have all of my teeth and I have perfect teeth… But you know, my father had [good] teeth… and that was a genetic trait that I got from someone in my family that benefited me”

Issues Concerning Genetic Research

• African American participation in research and generic careers

• Research benefits for community• Impact of religion and culture on research• Confidentiality and use of genetic test information• Involvement of community in research issues

Aware of the Human Genome Project

Yes66%

No 34%

Research Issues

“There is this whole new field called gene therapy. … if you can do some gene therapy while that child is in the womb, what’s wrong with doing that? But …there is still a lot of controversy...”

What “Access” Means

• Opportunity to obtain information

• Availability

• Easy to get

• Transportation

• Affordable

What “Access” Means

“Being able to get to it easily without barriers or just an easy way to get to it without going through a whole lot of barriers”

Barriers To Using Genetic Services

• Income• Type of insurance• Location of services• Religious barriers• Age or cultural biases• Issues of trust and fear• Knowledge, asking right questions

Barriers To Using Genetic Services

“We don’ t know what questions to ask.”

“…there was a guy named Hitler you know.” “They try things and with soldiers.” “Soldiers are guinea pigs.” “Yeah”. “You got them [soldiers] always in labs…. [laughter] I’ve seen em.” “This study is being funded by who?”

What “Empowerment” Means • Equipping people with resources and

knowledge

• Power to change or have input on issues

• Knowledge to make informed decisions

• Ability to make a difference

• Knowing your rights

• Education as a way to improve status

What “Empowerment” Means

“I don’t want everyone [to] be making the decision about my race and none of my race is at the table. So, I would just feel more comfortable with more of us at the table.”

Recommendations

1. Provide educational seminars to diverse community groups in local settings to increase the awareness of genetics

2. Increase interest in genetics and science by encouraging and exposing youth to field

3. Develop culturally appropriate educational materials to encourage community members to get involved in genetic issues

Recommendations4. Provide culturally appropriate genetic

materials, pamphlets/flyers, videos, PSAs for health care providers offices, local health departments, beauty shops and other neighborhood gathering places

5. Involve governmental agencies in communicating the importance of genetic issues to our community

6. Use schools and other community facilities as the “basis” of genetic education

Recommendations

7. Educate pastors and other community leaders about genetics so they can educate others

8. Schools should involve the community in the development of genetic educational materials and courses

9. Community members should interact with policymakers at various governmental levels to review genetic policy issues

Recommendations10.Community members should assist national,

state, and local agencies in developing culturally appropriate educational materials

11.Encourage community organizations to host activities and events that would provide participants with genetic information in an effort to interest others, regardless of age, education, or social economic status, about issues relating to genetics

Participant Quote“We need to get on the forefront, get involved with it [genetics], so that we can train and teach our culture what’s going on so that we can reap the benefits of it…When, as a group of people [are] we going to take the time to understand and learn… I want to be a part of this. …we need to look at how we can have a voice in this and help the people.”

Courtesy of Genetic Alliance, 2004

Courtesy of Genetic Alliance, 2004

MI GENE Project Partners

AcknowledgementsThe mission of the Genetic Education Needs Evaluation(GENE) Project is to develop community-based participatorystrategies to improve access to culturally and linguisticallyappropriate genetics information, resources, and services toassist underserved populations in making informed choicesabout their health.

Partners in the project include Health Services ResourcesAdministration, March of Dimes, Michigan GENE Project,Washington Heights/Inwood GENE Coalition, GeneticAlliance and Family Voices.

This project is supported by grant U93 MC 00157-02 from theHealth Resources and Services Administration, Maternal andChild Health Bureau, Genetic Services Branch.