Cambridge Core: Examining Access to Care in Clinical Genomic Research and Medicine: Experiences from the CSER Consortium (Tomlinson)

Published On: September 21, 2021
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Amanda M. Gutierrez[Opens in a new windo
Jill O. Robinson,
Simon M. Outram,
Hadley S. Smith,
Stephanie A. Kraft,
Katherine E. Donohue,
Barbara B. Biesecker,
Kyle B. Brothers,
Flavia Chen,
Benyam Hailu,
Lucia A. Hindorff,
Hannah Hoban,
Rebecca L. Hsu,
Sara J. Knight,
Barbara A. Koenig,
Katie L. Lewis,
Kristen Hassmiller Lich,
Julianne M. O’Daniel,
Sonia Okuyama,
Gail E. Tomlinson,
Margaret Waltz,
Benjamin S. Wilfond,
Sara L. Ackerman and
Mary A. Majumder

Abstract:

Introduction: Ensuring equitable access to health care is a widely agreed-upon goal in medicine yet, access to care is a multidimensional concept that is difficult to measure. Although frameworks exist to evaluate access to care generally, the concept of “access to genomic medicine” is largely unexplored and a clear framework for studying and addressing major dimensions are lacking.

Methods:

Comprised of seven clinical genomic research projects, the Clinical Sequencing
Evidence-Generating Research consortium (CSER) presents opportunities to examine access to
genomic medicine across diverse contexts. CSER emphasizes engaging historically
underrepresented and/or underserved populations. We used descriptive analysis of CSER
participant survey data and qualitative case studies to explore anticipated and encountered access
barriers and interventions to address them.

Results:

CSER’s enrolled population is largely lower-income and racially/ethnically diverse,
with many Spanish-preferring individuals. In surveys, less than a fifth (18.6%) of participants
reported experiencing barriers to care. However, CSER project case studies revealed a more
nuanced picture that highlighted the blurred boundary between access to genomic research and
clinical care. Drawing on insights from CSER, we build on an existing framework to characterize
the concept and dimensions of access to genomic medicine along with associated measures and
improvement strategies.

Conclusions:

Our findings support adopting a broad conceptualization of access to care
encompassing multiple dimensions, using mixed methods to study access issues, and investing in
innovative improvement strategies. This conceptualization may inform clinical translation of
other cutting-edge technologies and contribute to the promotion of equitable, effective, and
efficient access to genomic medicine.
Keywords:
Genomics, genetics, genome sequencing, genetic testing, personalized medicine,
precision medicine, access to care, access to genomic medicine, health policy, health equity,
health disparities

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Since 2004, UT Health San Antonio, Greehey Children’s Cancer Research Institute’s (Greehey CCRI) mission has been to advance scientific knowledge relevant to childhood cancer, contribute to the understanding of its causes, and accelerate the translation of knowledge into novel therapies. Through discovery, development, and dissemination of new scientific knowledge, Greehey CCRI strives to have a national and global impact on childhood cancer. Our mission consists of three key areas — research, clinical, and education.

Stay connected with the Greehey CCRI on Facebook, Twitter, LinkedIn, and Instagram.

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Article Categories: Research Paper

Since 2004, UT Health San Antonio, Greehey Children’s Cancer Research Institute’s (Greehey CCRI) mission has been to advance scientific knowledge relevant to childhood cancer, contribute to understanding its causes, and accelerate the translation of knowledge into novel therapies. Greehey CCRI strives to have a national and global impact on childhood cancer by discovering, developing, and disseminating new scientific knowledge. Our mission consists of three key areas — research, clinical, and education.

Stay connected with the Greehey CCRI on Facebook, Twitter, LinkedIn, and Instagram.