International Journal of Epidemiology, 2017, 15
doi: 10.1093/ije/dyw334
Photoessay
Photo-documentation in the community:
reflections on genetics, health and health
disparities
Laura Morello, Patricia A. Marshall, Christopher D. Hartmann,
Sanjur Brooks, Kari Colo n-Zimmermann and Aaron J. Goldenberg*
Department of Bioethics, Centre for Genetic Research Ethics and Law (CGREAL), Case Western
Reserve University, Cleveland, OH, USA
*Corresponding author. Department of Bioethics, School of Medicine, TA-212, Case Western Reserve University, 10900
Euclid Avenue, Cleveland, OH 44106-4976, USA. E-mail: aaron.goldenberg@case.edu
Accepted 31 October 2016
There is a growing debate among genetic researchers,
social scientists and public health officials about the rele-
vance of genetic information for assessing and addressing
health disparities.13 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 dis-
regard for social and environmental determinants of
health. Unfortunately, the voices of underserved and ethni-
cally 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 commun-
ity partnerships to help recruit and engage study partici-
pants 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 partici-
pated 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.
C The Author 2017; all rights reserved. Published by Oxford University Press on behalf of the International Epidemiological Association
V 1
Photoessay
Each group of participants received an introduction to
genetics and disparities and learned about the original
studys findings. The research team then facilitated discus-
sions with the participants on the concepts of genetics,
influences on health outcomes and disparities in their com-
munity. A professional photographer provided an over-
view 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 attend-
ance from many of the participants and the public.
Analysis of the photographs and writings from this proj-
ect 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 com-
mon perspectives on influential health factors, including
issues of chronic disease and medication, concerns about
alcoholism and drug use, and the physical challenges asso-
ciated with living in impoverished neighbourhoods. In
addition, both groups captured how other variables,
2 International Journal of Epidemiology, 2017, Vol. 0, No. 0

including family, socialization and health beliefs, help to Endless solution (youth)
mediate the influence of genetics and socioeconomic bar-
riers. This photoessay confirms the need for further inter-
generational 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)
Day by day this is reality, what people go through, pills
and pills, bottles of pills. Its just an endless amount of pre-
scription pills; its just an endless solution.

Breakfast: signs of the times (senior)

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 its bad for my health at
Menu: Toast, coffee, cereal, orange juice, plus: three blood
this age.
pressure pills, two diabetic pills, one cholesterol pill, one
calcium and vitamin D pill, one aspirin. Bon appetit!
International Journal of Epidemiology, 2017, Vol. 0, No. 0
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.
3
Impact of neighbourhoods
Youth
This shows all the things that need to change in Cleveland.
All the littering and the trash everywhere that isnt 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 con-
stantly are trying to bring out the beauty of our community,
which may seem ugly like the fence and bad to others.
4 International Journal of Epidemiology, 2017, Vol. 0, No. 0
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 shes 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.
Ive 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. Its 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, know-
ing that I am helping others.
International Journal of Epidemiology, 2017, Vol. 0, No. 0 5

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.
References
1. Burke W, Burton H, Hall AE et al. Extending the reach of public
health genomics: what should be the agenda for public health in
an era of genome-based and personalized medicine?. Genet
Med 2010;12:78591.
2. Fine MJ, Ibrahim SA, Thomas SB. The role of race and genetics in
health disparities research. Am J Public Health
2005;95:212528.
3. Sankar P, Cho MK, Condit CM et al. Genetic research and health
disparities. JAMA 2004;291:298589.
4. Goldenberg AJ, Sharp RR, Marshall PA. Next-generation dis-
advantages: identifying potential barriers to integrating gen-
omics into medically underserved settings. Pers Med
2013;10:62325.
5. Goldenberg AJ, Hartmann CD, Morello, L, Brooks S, Col on-
Zimmermann K, Marshall PA. Gene-environment interactions
and health inequalities: Views of underserved communities.
J Community Genet 2013;4:42534.
6. Hartmann CD, Marshall PA, Goldenberg AJ. Is there a space for
place in family history assessment? Underserved community views
on the impact of neighbourhood factors on health and prevention.
J Prim Prev 2016;36:11930.
7. Wang C, Burris M. Photovoice: Concept, methodology, and use
for participatory needs assessment. Health Educ Behav
1997;24:36987.