Priyanka Ahimaz, MS, CGC; Scott Robinson, MS, CGC; Rebecca Hernan, MS, CGC; Julia Wynn, MS, MS, CGC
In early March 2020, as the threat of the COVID-19 pandemic grew daily in New York City, there was an urgent need to enroll positive patients into the Columbia University Biobank (CUB) to study the virus.
The CUB was established in 2019 as a centralized resource to collect, store, and disseminate biological specimens as well as clinical and genetic data to researchers within the institution. Enrollment of patients with COVID-19 enabled our physicians and researchers to immediately engage in research directly impactful to patients and our community.
Given the need for rapid, high-volume recruitment efforts, our clinical genetic counselors were identified as being uniquely positioned to help. We present here how our skillset was translated to research recruitment roles to serve as a guide for similar future endeavors.
Given the need for rapid, highvolume recruitment efforts, our clinical genetic counselors were identified as being uniquely positioned to help.
- Rapport building: It is crucial to build trust to allow for a conversation about research, particularly for participants who are initially mistrustful of research or discussing medical/genetic information. Genetic counselors are trained in facilitation of client-centered conversation, which allows us to effectively build rapport.
- Informed consent: Consent for genetic testing is complex and requires that clients have an adequate understanding of the risks, benefits, and limitations of the process to make an informed decision. Genetic counselors can directly transfer this skill to research consenting, which often involves nuanced information, including return of research results, undefined research testing being performed, ability to re-contact, etc.
- Translating complex information for a diverse community: Successful research requires a diverse sample reflective of the population. Recruiters must communicate complex details to people with different education levels, cultures, and languages. The range of individuals eligible for the COVID-19 biobank varied, which required recruiters to swiftly tailor study protocol language to each individual participant. Genetic counselors are well trained to quickly and accurately assess a person’s comprehension and disseminate scientific information in an accessible and culturally competent manner.
- Bridging the gap in translational research: One of the most important factors that drives research is participant engagement with the study. This requires participants to understand how their contribution to research can directly impact clinical care and patient outcomes. Genetic counselors can effectively address this gap due to our clinical knowledge base, familiarity with clinical research, and ability to guide a participant through the research process. These skills also translate well to the creation of a medical data questionnaire for participants that is vital to understand the experience of COVID-19 positive individuals. Since the participant completes the questionnaire, it needs to be written in client-friendly language, while still collecting the necessary data with the highest level of accuracy possible.
- Organizational skills: A high level of organization and attention to detail is required to maintain an orderly research workflow. Due to our experience in coordinating patient care, genetic counselors are well equipped to manage individual participant data. These skills can also be translated to a larger scale allowing us to coordinate overall study processes, including database management, survey design and dissemination, and recruitment workflows.
- Counseling skills: Genetic counselors are trained to identify and react appropriately to emotional concerns, and provide resources to families who require them. This skill is especially helpful when recruiting participants for COVID-19 research, as several have grappled with symptoms of the condition themselves, lost loved ones to the pandemic, or are from communities that are vulnerable to the hardships caused by COVID-19.
The impact of COVID-19 on our community has been profound and may have long-term implications to our institutional practices. While we as genetic counselors did not have the clinical skillset to be of assistance on the front line, we were able to leverage our unique skills to help in a valuable way.
Our experiences demonstrate only some of the ways in which genetic counseling skills can be leveraged to help improve patient outcomes and lead to better patient care, not only for our patients but also for any who may benefit from this research. We hope the knowledge gained from the participants we recruited will change the course of the COVID-19 pandemic and help prepare the scientific community in the event of future medical crises.
Priyanka Ahimaz, MS, CGC Priyanka Ahimaz, MS, CGC, is a Senior Genetic Counselor at the General Genetics Division at Columbia University Irving Medical Center. She is the Lead Coordinator of the Congenital Anomalies Research Exploration (CARE) that investigates genomic factors that contribute to the formation of various birth defects, currently focusing on tracheoesophageal defects.
Scott Robinson, MS, CGC is a Clinical and Research Genetic Counselor at Columbia University Irving Medical Center (CUIMC). She is a founding co-chair of the Genetic Counselor Consortium of CUIMC and serves on the curriculum committee for the Columbia University Genetic Counseling Graduate Program.
Rebecca Hernan, MS, CGC is a Clinical and Research Genetic Counselor at Columbia University Irving Medical Center (CUIMC). She is a founding co-chair of the Genetic Counselor Consortium of CUIMC and serves on the curriculum committee for the Columbia University Genetic Counseling Graduate Program.
Julia Wynn, MS, MS, CGC is a Senior Genetic Counselor in the Division of Molecular Genetics at Columbia University Irving Medical Center. Her research focuses on the patient/participant experience of diagnostic and predictive genetic testing, and alternative methods of genomic education and counseling. She was the 2016 winner of the Jane Engelberg Memorial Fellowship.