Introduction: Groups of general public, cancer patients and healthcare professionals were surveyed on awareness, knowledge, and willingness pertaining to genetic testing. This study aims to understand the discrepancies on perspectives and awareness of genetic testing amongst different segments and suggest measures to enhance and improve the awareness of genetic testing and its usage.
Methods: The survey was carried out from November 2016 to February 2017. As for the general public, the survey pool of total 1,500 adults living in Korea aged 18 to 65 were selected based on demographic quota sampling method. In the survey for cancer patients, total of 1,500 patients who visit National Cancer Center and Seoul Samsung General Hospital for treatment were selected. They were segmented into 5 subgroups based on their cancer types (i.e five major cancers: gastric, colon, lung, breast, and gynecological) whereby each were populated with 300 patients. Regarding general public and patients, the engaged survey method was a one-to-one interview where professionally educated interviewers from research agency carried out the interview process. For healthcare professionals, we implemented self-assessment survey to participants of the symposium hosted by Korea Cancer Association held in Nov.2016.
Result: In the general public segment, of the 1,500 sample pool, we analyzed total of 1,496 surveyor excluding those were diagnosed with cancer. For cancer patients, interview of total of 1,500 surveyors were analyzed and as per healthcare professionals, from the total of 542 surveyors, we analyzed 526 participants subtracting out 16 who failed to provide demographic information such as gender, age or occupation. Pertaining to the healthcare professionals, taking into consideration of the characteristics of the occupation, we segmented the group into two sub-segments of clinicians and researchers for the analysis. Pertinent to the question on level of awareness of genetic testing to general public and cancer patients, circa 90% answered that they were aware of genetic testing which is significantly high share when compared to other previous studies. As for awareness and attitude towards genetic testing, on the question asking one’s inclination to receiving genetic test when offered free of charge, all of the surveyed groups answered in high percentages that they were willing, which is a similar trend from former studies. Moreover, when asked about potential social disadvantage associated with genetic testing, the general public and cancer patients displayed more positive awareness than that of healthcare professionals.
Conclusion: In this study, we surveyed, researched and analyzed the level of recognition regarding genetic testing for target sample groups of general public and cancer patients as well as the level of awareness of genetic testing for groups of general public, cancer patients and healthcare professionals. The result of the survey evidently confirms that there is a clear distinction in attitudes and awareness on genetic testing amongst different target groups of the survey. In order to enhance and improve the awareness of genetic testing, accurate and proper information needs to be provided and disseminate and further research should be carried out on solutions to address the relevant ethical issues and potential social discrimination or disadvantages that may occur from disclosure of test results.
Yoon-Jung Chang, M.D., Ph.D.
– Chief, Department of Hospice & Palliative Service, National Cancer Center
– Associate Professor, Department of Cancer Control and Population Health, National Cancer Center Graduate School of Cancer Science and Policy
Dr. Yoon-Jung Chang, chief of department of Hospice & Palliative Service, National Cancer Center Korea, earned her MD from Ewha Womans University, Korea, and completed residency and fellowship training in Family Medicine at Seoul National University Hospital, Seoul, Korea. Her current research interests include Hospice & palliative care policy development, improvement of quality of life for cancer patients and family and medical ethics.
– Premedical Degree Ewha Womans University, 1994
– M.D. Ewha Womans University; College of Medicine, 1998
– M.P.H. Seoul National University; School of Public Health, 2005
– Ph.D. Catholic University; Graduate School, 2010
– Ph.D Candidate Seoul National University; School of Medicine, Medical Humanity, 2016
- Selected Publications
– Park, B., Sohn, J. Y., Yoon, K. A., Lee, K. S., Cho, E. H., Lim, M. C., … & Lee, D. O. (2017). Characteristics of BRCA1/2 mutations carriers including large genomic rearrangements in high risk breast cancer patients. Breast cancer research and treatment, 163(1), 139-150.
– Sim, J. A., Chang, Y. J., Shin, A., Noh, D. Y., Han, W., Yang, H. K., … & Kim, Y. J. (2017). Perceived needs for the information communication technology (ICT)-based personalized health management program, and its association with information provision, health- related quality of life (HRQOL), and decisional conflict in cancer patients. Psycho-Oncology.
– Lee, S. W., Jho, H. J., Baek, J. Y., Shim, E. K., Kim, H. M., Ku, J. Y., … & Kim, S. Y. (2017). Outpatient Palliative Care and Aggressiveness of End-of-Life Care in Patients with Metastatic Colorectal Cancer. American Journal of Hospice and Palliative Medicine®,1049909116689459.
– Shim, H. Y., Chang, Y. J., Kawk, K. S., Mai, T. T. X., Choi, J. Y., Ahn, E. M., … & Park, S. J. (2017). Do Korean Doctors Think a Palliative Consultation Team Would Be Helpful to Their Terminal Cancer Patients? Cancer research and treatment: official journal of Korean Cancer Association, 49(2), 437.
– Yun, Y. H., Kim, Y. A., Sim, J. A., Shin, A. S., Chang, Y. J., Lee, J., … & lll Zo, J. (2016). Prognostic value of quality of life score in disease-free survivors of surgically-treated lung cancer. BMC cancer, 16(1), 505.
– Jho, H. J., Choi, J. Y., Kwak, K. S., Chang, Y. J., Ahn, E. M., Park, E. J., … & Kim, S. H. (2016). Prevalence and Associated Factors of Anxiety and Depressive Symptoms Among Bereaved Family Members of Cancer Patients in Korea: A Nation-Wide Cross-Sectional Study. Medicine, 95(22).
– Sim, J. A., Shin, J. S., Park, S. M., Chang, Y. J., Shin, A., Noh, D. Y., … & Kim, Y. T. (2015). Association between information provision and decisional conflict in cancer patients.
– Jho, H. J., Chang, Y. J., Song, H. Y., Choi, J. Y., Kim, Y., Park, E. J., … & Choi, H. J. (2015). Perceived timeliness of referral to hospice palliative care among bereaved family members in Korea. Supportive Care in Cancer, 23(9), 2805-2811.
– Chang, Y. J., & Kong, S. Y. (2015). Legal and Ethical Use of Biospecimens in Research Following Major Revision of the Bioethics and Safety Act. Laboratory Medicine Online, 5(3), 113-120.
– Lee, E. Y., Mai, T. T. X., Chang, Y., & Ki, M. (2015). Trends of liver cancer and its major risk factors in Korea. Epidemiology and health, 37.