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

Autor: Li X; Department of Situation and Policy, University of International Business and Economics, Beijing, China., Cong Y; Department of Medical Ethics and Law, Peking University Health Science Center, Beijing, China. ethics@bjmu.edu.cn.
Jazyk: angličtina
Zdroj: BMC medical ethics [BMC Med Ethics] 2024 Nov 15; Vol. 25 (1), pp. 132. Date of Electronic Publication: 2024 Nov 15.
DOI: 10.1186/s12910-024-01135-8
Abstrakt: Background: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
Competing Interests: Declarations Ethical approval and consent to participate This investigation was reviewed and approved by the Health Science Center of Peking University IRB (No IRB00001052-19013). To safeguard the privacy of the respondents, we proactively requested them to mask any identifying characteristics that could potentially lead to recognition. Moreover, all respondents provided informed consent, having received comprehensive written and oral information about the project. This information included details about the objectives and topics of the focus group interviews, the confidentiality measures in place to protect their data, the storage and use of the data for scientific papers and presentations, as well as the option to withdraw from the study at any point without providing a specific reason. Throughout the transcription process, careful consideration was given to protecting the identities of individuals, institutions, and locations involved in the study. Names were changed, and any information that posed a risk of identifying individuals was handled with utmost caution. Consent for publication Not applicable. Competing interests The authors declare no competing interests.
(© 2024. The Author(s).)
Databáze: MEDLINE
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