보건의료빅데이터 연구에 대한 대중의 인식도 조사 및 윤리적 고찰

The Overview of the Public Opinion Survey and Emerging Ethical Challenges in the Healthcare Big Data Research

Purpose: The traditional ethical study only suggests a blurred insight on the research using medical big data, especially in this rapid-changing and demanding environment which is called "4th Industry Revolution." Current institutional/ethical issues in big data research need to approach with the thoughtful insight of past ethical study reflecting the understanding of present conditions of this study. This study aims to examine the ethical issues that are emerging in recent health care big data research. So, this study aims to survey the public perceptions on of health care big data as part of the process of public discourse and the acceptance of the utility and provision of big data research as a subject of health care information. In addition, the emerging ethical challenges and how to comply with ethical principles in accordance with principles of the Belmont report will be discussed. Methods: Survey was conducted from June 3th August to 6th September 2020. The online survey was conducted through voluntary participation through Internet users. A total of 319 people who completed the survey (±5.49%P [95% confidence level] were analyzed. Results: In the area of the public's perspective, the survey showed that the medical information is useful for new medical development, but it is also necessary to obtain consents from subjects in order to use that medical information for various research purposes. In addition, many people were more concerned about the possibility of re-identifying personal information in medical big data. Therefore, they mentioned the necessity of transparency and privacy protection in the use of medical information. Conclusion: Big data on medical care is a core resource for the development of medicine directly related to human life, and it is necessary to open up medical data in order to realize the public good. But the ethical principles should not be overlooked. The right to self-determination must be guaranteed by means of clear, diverse consent or withdrawal of subjects, and processed in a lawful, fair and transparent manner in the processing of personal information. In addition, scientific and ethical validity of medical big data research is indispensable. Such ethical healthcare data is the only key that will lead to innovation in the future.