Towards Educating and Engaging the American-Muslim Community in the National Dialogue on ELSI of Genomic Technologies Khaled Bouri, Ph.D.; MPH Food and Drug Administration The George Washington University

The views and opinions expressed in the following presentation DO NOT represent the official views of the FDA Disclaimer

 To educate the public about the benefits and the limitations of the use of genomic technologies in medicine  Racial, ethnic and religious minorities may have different opinions and needs, and require different approaches to design and disseminate health education campaigns Scope of the Project

Specific Aims  Identify the perception and concerns of the Muslim community regarding genomic technologies  Define an approach to design and develop health communication materials specific to the Muslim community  Identify communication channels and dissemination approaches to deliver health education materials

Methodology Research design: - Formative research Instruments: - Five individual interviews with community leaders Reviewed, revised focus group instrument and recruitment strategy - Focus group (Community members 49) 7 sessions ( 2 for women, 5 for men) Data collection: - Qualitative data (focus groups transcripts)

Arabs South Asians Arabs South Asians African Americans South Asians African Immigrants

Gender:68% Male32% Female Marital Status: 26% Single67% Married 7% Divorced/Widowed Education: 22% HS39% Undergraduate 39% Graduate Race/Ethnicity: 38% Arabs17% South Asians 34% Africans 11% African Americans Participants Demographics

Results: Perceptions and Opinions of Participants Towards Genomic Medicine Participants have positive opinion about the use of genomic technologies in medicine: “ It is good thing, it makes people aware of the problems and might help them to prevent it from happening” Participant 5 “it is good thing to know about your risk, so you can take care of it” Participant 7 Satisfied BUT have major concerns: I.Confidentiality II.Access to services

Participants are satisfied BUT have major concerns: A. Confidentiality “there is a lot of problem, you never know, you go for an interview and they tell you, you can’t have this job, we know that you will have this disease, we know your family problems, I mean they can use it against you” Participant 13 “A huge problem that the medical system is facing, how to keep medical records protected and private…even if the doctor will keep this information private, but this information is on a machine, on the internet, and people can hack this machine” Participant 9 Perceptions and Opinions Cont,

B. Access to Services “a lot of people don’t have access the basic needs of health, so how do expect they will benefit from this expensive stuff” Participant 56 “the cost and access to this kind of information might be a big problem for a lot of people” Participant 32

- Fatalistic attitude towards disease (God’s will) - Faith help people cope with illness - Teachings are full of health-related messages - God gave us the tools and guidance to take good care of ourselves Genes, Disease, and Faith

Summary  The American Muslim community has, in general, positive opinion about genomic technologies  The community has serious concerns (confidentiality and access to services)  There are no gender-specific concerns  Community members consider mosque and Imams as credible sources of health information  Religious faith may impact individual beliefs on how genes influence health and provides coping mechanism  Building trust relationship with the Muslim community is essential for