RESUMO
Achieving health equity in precision medicine remains a critical challenge because of the continued underrepresentation of non-white populations in research and barriers to genetic services. The goal of this study was to explore Vietnamese American (VA) participant views toward incorporating genetics in routine healthcare to better serve the local VA community within an integrated health system offering primary care-based population genetic testing to adults for conditions that could be prevented or mitigated when detected early. We conducted semi-structured interviews from August-September 2021, with 22 individuals receiving primary care who self-identified as Vietnamese or VA, and employed rapid qualitative analysis (RQA) to identify key concepts. Community research team members participated in study design, data collection, RQA, and reporting. Findings from the interviews revealed that several participant perceived challenges to genetic testing, which included lack of information, fear of results impact, cost, and privacy concerns. Participants suggested various ways to overcome some of these barriers, such as decreasing the cost of testing, receiving information from a trusted physician, using preferred education strategies in the community, and having convenient access to testing. Study participants also shared a variety of trusted sources they would seek out for advice on genetic testing. This study with VAs identified barriers, facilitators, and messengers to offering genetic testing in a local healthcare context and demonstrated how community-engaged research coupled with RQA is a promising approach for healthcare institutions as they identify needs and tailor strategies for implementing population genetic screening programs in local ethnic communities.
RESUMO
BACKGROUND: Due to the COVID-19 pandemic, many genetics clinics across the country were prompted to integrate telephone visits and videoconferencing into their practice to promote the safety of patients and clinic staff members. Our study examined providers' perspectives on the utility and effectiveness of these telehealth-based clinic visits in response to the COVID-19 pandemic in Wisconsin. METHODS: An anonymous Qualtrics survey was distributed via email in October 2020 to all members of the Wisconsin Genetic Systems Integration Hub and the Wisconsin Genetic Counselor Association. Current clinical genetic providers were eligible to participate in the survey. The survey assessed providers' experiences and perceptions toward utilizing telehealth in delivering clinical genetic services to their patients during the pandemic. RESULTS: Forty-seven currently practicing clinical genetic counselors in Wisconsin either partially or fully completed the survey. Nearly all respondents somewhat (23%) or strongly (75%) wanted to incorporate telehealth in the future, primarily because of perceived improvements in clinic functioning. Patients with suboptimal telecommunications capacities were considered the most challenging aspect of telehealth, and better technology support was the most frequently cited strategy for addressing current telehealth limitations. CONCLUSION: Clinical genetic counselors in Wisconsin generally reported positive experiences integrating telehealth into their patient care during the COVID-19 pandemic. Many counselors see telehealth as a way to increase access to genetic services and, with better technology support from their intuitions, would support utilizing telehealth in their clinical practice.