MEET PARTICIPANT NAVIGATOR ELISE MCLIN
MEET PARTICIPANT NAVIGATOR ELISE MCLIN
Elise McLin is a program coordinator II in the Recruitment and Retention Shared Facility ( RRSF ) in the UAB Division of Preventive Medicine . She has been with RRSF since 2002 and helped with countless research studies . She supported the AGHI from the beginning of the study in 2017 as one of its most trusted participant navigators .
McLin has worn many hats during her tenure at UAB , which began in 2006 . She has been a research interviewer , participant retention specialist , and research specialist . After completing training at the Harold P . Freeman Institute in Harlem , New York , she became a certified patient navigator .
McLin remembers when the AGHI began , when training for participant navigators was provided prior to the study ’ s launch . “ I had never heard anything about genes or the human genome , which is why I found the study so interesting ,” she says .
McLin acknowledges that the 12-page participant consent form for the AGHI is long , but communicating the important information to participants contained in those pages is important to her , and she senses that participants become more comfortable as a result . She enjoys sharing information about precision medicine and how genetic screening tests work . She is intentional about respecting each participant ’ s time and trust in the study , and she strives to be considerate in addressing any questions or concerns raised during the enrollment process .
Some people are hesitant to share their personal and family health histories , while others are eager to share . The AGHI offers an option to participate in future research through sharing genetic data . McLin says this aspect of the study always prompts questions , so she devotes as much time as necessary to answering them and allows participants to carefully consider this choice , always emphasizing that sharing data is optional and not required for enrollment .
She sometimes shares examples of how these data may be used – to increase understanding about high cholesterol in African American women , for example . Most people understand and are willing to do so , motivated by a desire to help other people . But respecting the decision to opt out of sharing personal data is a priority , and McLin communicates information clearly to help participants make informed decisions .
McLin believes in the work AGHI is doing . She is particularly interested in the new process of returning pharmacogenetic information to participants and their medical providers . A friend of hers recently was diagnosed with colon cancer and is waiting to find out if there are targeted treatments that might work well for her . The wait seems like an eternity , but such delays may not be necessary if pharmacogenetics can close that gap . “ What if that information was already a part of her medical record , and the doctor just needed to pull that file and act on it ?” McLin asks .
That may become a reality one day . How pharmacogenetics and genetic screening may impact health care in the future is exciting to McLin , and she looks forward to continuing to support the AGHI and its participants .
16 Alabama Genomic Health Initiative Annual Report 2021