There is a growing debate among genetic researchers, social scientists and public health officials about the relevance of genetic information for assessing and addressing health disparities.1–3 Whereas some scholars believe that genetic information can help to elucidate differences in health outcomes between populations, others fear that placing too much emphasis on genetics will result in a disregard for social and environmental determinants of health. Unfortunately, the voices of underserved and ethnically diverse communities experiencing health disparities are often left out of these discussions.4 Because of these concerns, a community-engaged study was undertaken to gain an understanding of the perceptions of genetics and health disparities within underserved communities.5,6
A key aim of this study was not only to create community partnerships to help recruit and engage study participants through interviews and focus groups, but also to use innovative methods to disseminate the findings back to the community and continue the engagement process. A method of photo-documentation7 involving photography and reflective writing was used. Two different underserved population groups in the greater Cleveland area participated in this project: Latino youths who attended programmes at the organization Esperanza, Inc., and African-American seniors who frequented the Helen S. Brown Senior Centre.
Each group of participants received an introduction to genetics and disparities and learned about the original study’s findings. The research team then facilitated discussions with the participants on the concepts of genetics, influences on health outcomes and disparities in their community. A professional photographer provided an overview of photography and operating instructions. All participants were then tasked to take photographs that captured the aforementioned themes. In the final week of the sessions, participants shared their images with the whole group and spent time writing and reflecting their thoughts about the photographs. Art openings showcasing the participants’ selected photographs were held near the neighbourhoods of both community groups, with attendance from many of the participants and the public.
Analysis of the photographs and writings from this project revealed common themes between both community groups, reflecting shared concerns and insights regarding health, genetics and health disparities in their communities. These two groups, who differed by race, ethnicity, age and geographical location, shared themes that highlighted common perspectives on influential health factors, including issues of chronic disease and medication, concerns about alcoholism and drug use, and the physical challenges associated with living in impoverished neighbourhoods. In addition, both groups captured how other variables, including family, socialization and health beliefs, help to mediate the influence of genetics and socioeconomic barriers. This photoessay confirms the need for further intergenerational engagement with underserved communities on their beliefs about advancing genomic technologies, and how such technologies may impact on their communities in the future. Without such engagement and inclusion, underserved communities may be further marginalized, leading to an exacerbation of the disparities that health research is meant to alleviate.4
The photos below are organized into thematic areas related to health and health disparities.
Perspectives on health
Relaxation (youth)
This picture shows how people in the community love to drink alcohol and how they say that alcohol relaxed them in a hard day of work. In this picture, my cousin is shown relaxing in my backyard having a drink of beer. I ask my cousin why he drinks so much after work. He tells me that alcohol relaxes him and he drinks to have fun, but he tells me that I should not drink because it’s bad for my health at this age.
Endless solution (youth)
Day by day this is reality, what people go through, pills and pills, bottles of pills. It’s just an endless amount of prescription pills; it’s just an endless solution.
Breakfast: signs of the times (senior)
Menu: Toast, coffee, cereal, orange juice, plus: three blood pressure pills, two diabetic pills, one cholesterol pill, one calcium and vitamin D pill, one aspirin. Bon appetit!
Out of the ordinary (youth photo taken at the Hispanic Senior Centre)
I saw the dominoes in a new way, out of the ordinary, and each one represented a person and how sick they are. The higher in dots, the sicker one is, and lower in dots, the healthier one can be.
Beliefs and values
The path (youth)
We are all on different paths. Even though some of our paths do cross, we decide our brighter future. The light reminds us that God is watching us.
Impact of neighbourhoods
Youth
This shows all the things that need to change in Cleveland. All the littering and the trash everywhere that isn’t getting this city anywhere but making it look like a trash dump.
Struggling beauty (youth)
These flowers are growing in different directions, inside and out of the gate. But when I look at it, I see the flowers are trying to escape from the inside of the gate. It captured my attention because this is related to our life. Some people constantly are trying to bring out the beauty of our community, which may seem ugly like the fence and bad to others.
Role of family
When healthy families are sad (youth)
This photo shows love. It shows a mom feeling sad for her son when he was sick; but it also shows she’s always there for him as his mother.
Three generations (senior)
This photo reflects a family that is together and they desire to be together. There is love. You can see the love the grandfather has for his daughter and his grandchildren. I’ve known them for over 30 years and I consider them to be friends and they are a friend to me. We worship and pray together every Sunday. When I need someone to help me, I can call them. We are closely connected.
Role of socialization and recreation
Social gathering (senior)
I took these photos at the senior centre because we all have diabetes, hypertension, and we all have something in common. To come here and laugh is healthy. It’s not just about playing cards, but it gives us a chance to socialize and challenge one another, and learn about one another when we were younger. This is the health centre to help us help ourselves.
People in motion (senior)
Diabetes, high-blood pressure and high cholesterol are all connected to exercise. I teach exercise because I take care of my health and I help others to take care of their health. I feel a certain satisfaction by volunteering to teach, knowing that I am helping others.
Funding
This study was supported by the National Institute of Health Centre for Minority Health and the National Human Genome Research Institute (1RC1HG005789).
Acknowledgements
Billy Delfs and Lamar Cole are two photographers in the greater Cleveland area. We are extremely grateful for the full support and involvement of our two partner organizations, Esperanza, Inc., and the Helen S. Brown Senior Centre.
Conflict of interest: None declared.
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