Exploring barriers and ethical challenges to medical data sharing: perspectives from Chinese researchers

• Published in: BMC medical ethics Vol. 25; no. 1; pp. 132 - 11
• Main Authors: Li, Xiaojie, Cong, Yali
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 15.11.2024; BioMed Central; BMC
• Subjects: Beliefs, opinions and attitudes; Benefits sharing; Big Data; Biomedical Research - ethics; China; Confidentiality - ethics; Data collection; Data integrity; Data protection law; Data quality; Data sensitivity; Data sharing; East Asian People; Ethical aspects; Ethics; Ethics, Research; Female; Focus Groups; Hospitals; Humans; Information Dissemination - ethics; Information professionals; Information sharing; Informed Consent - ethics; Interviews; Male; Management science; Medical data; Medical ethics; Medical research; Medical research personnel; Medicine, Experimental; Personal information; Physicians; Privacy; Public opinion; Research Personnel - ethics; Researchers; Scientists; China; Medical data; Data protection law; Data quality; Benefits sharing; Data sharing; Data sensitivity
• DOI: 10.1186/s12910-024-01135-8
• ISSN: 1472-6939

The impetus for policies promoting medical data sharing in China has gained significant traction. Nonetheless, the present legal and ethical framework governing the research use of medical data in China, is characterized by a more restrictive rather than permissive approach. The proportion of Chinese medical data being leveraged for scientific research still has room for improvement at present, indicating a significant untapped potential for advancing medical knowledge and improving healthcare outcomes. Building upon this research, we aim to delve deeper into the challenges researchers encounter in the sharing of medical data through focus group interviews. We conducted two focus group interviews study with researchers representing diverse disciplines to explore their perspectives on 21 June 2021 and 28 July 2021. A total of seventeen researchers willingly participated in this study, representing various professional backgrounds. Similar codes were merged. Research team discussions were also utilized to select interviewees' statements that were regarded as typical or representative. The respondents demonstrated a strong understanding that medical data should not be disseminated arbitrarily, recognizing the importance of sharing data in compliance with laws. Through the interview, we found that although respondents stressed the importance of careful consideration regarding if and when this information can be responsibly released, none of the respondents raised the issue of necessitating consent from data subjects for the research use of medical data. This observation sharply contrasts with the stringent separate consent provisions for secondary data use outlined in the PIPL. The findings from the focus group studies shed light on researchers' barriers and ethical challenges towards medical data sharing for scientific research, highlighting their deep concern for data security and cautious approach to sharing. The key objectives aimed at facilitating and enabling the reuse of medical data encompass enhancing interoperability, harmonizing data standards, improving data quality, safeguarding privacy, ensuring informed consent, incentivizing patients, and establishing explicit regulations pertaining to data access and utilization.