In the contemporary digital landscape, the exchange of patient data plays a pivotal role in enhancing healthcare outcomes, fostering research advancements, and promoting public health benefits. However, this practice raises significant ethical considerations that warrant careful examination. This systematic review delves into the moral implications associated with sharing patient data, shedding light on the intricate interplay between security, consent, privacy, and societal welfare. Within the healthcare industry, the sharing of patient data holds immense potential to propel clinical care forward, drive medical research progress, and shape health policy. The analysis provides practical insights into navigating the delicate balance between the benefits of data sharing and concerns related to bias, discrimination, and access. “Ethical Considerations in Sharing Patient Data” not only furnishes practical advice, but also presents a comprehensive framework for navigating the intricate ethical terrain inherent in patient data sharing. Policymakers, medical professionals, researchers, and patients stand to gain valuable insights and recommendations from this study.
Top1. Introduction
In the contemporary landscape of rapidly advancing technology and an explosion of healthcare data, Balyan et al. (2022) underscore the indispensability of patient data exchange in healthcare research, policy formulation, and clinical practice. This chapter delves into the ethical complexities surrounding health data sharing, exploring fundamental principles such as patient autonomy, privacy, and societal benefit. Building on the foundation laid by Balestra (2017) and the guidance of Bani Issa et al. (2020), it acknowledges the growing prominence of open access in disseminating research data and the resultant ethical and practical challenges, particularly in research involving human subjects. Blease (2023) contributes by offering a comprehensive overview of how open access to research data influences the core tenets of research ethics—respect for persons, beneficence, and justice. The discussion emphasizes the need to reinterpret these tenets to craft policies that safeguard the rights and welfare of human research participants. The chapter recognizes the ethical difficulties associated with data sharing, emphasizing the importance of avoiding pitfalls to protect patient rights, privacy, and equitable distribution of benefits.
The abstract provides an overview of the moral dimensions inherent in patient data sharing, framing the relevance of patient data in healthcare, encompassing clinical decision-making, medical research, and policy formulation. Ethical implications, including equity, privacy, confidentiality, data ownership, security, and patient autonomy, are thoroughly examined (Chadwick 2001). The intricate interactions between these moral precepts form a comprehensive framework for understanding the ethical terrain of patient data sharing. Privacy and confidentiality take center stage as the chapter explores the ethical and legal foundations guiding the protection of patient data, with specific attention to the challenges of de-identification, re-identification, and the importance of informed consent (Chiruvella 2021). Ethical responsibilities related to safeguarding patient data from cybersecurity risks are addressed, highlighting the importance of healthcare institutions and researchers in this regard (Dou 2023).
Hassan et al. (2021) delve into the contentious issues of data ownership, control, custodianship, stewardship, and patient empowerment concerning health data. The chapter discusses ethical challenges posed by cyber threats and security lapses, emphasizing the responsibility of academics and healthcare organizations to protect patient data and outlining the negative consequences of data breaches. The ethical considerations extend to healthcare inequalities, with a focus on issues of access and fairness. Balancing the benefits of data-driven healthcare with concerns about prejudice, discrimination, and digital divides emerges as a key challenge. Finally, research ethics underscore the imperative of adopting open and responsible research methods, as highlighted by Hayat et al. (2021).
This chapter makes modest contributions by identifying ethical questions associated with patient data sharing in healthcare. While recognizing the importance of data exchange for advancing clinical care and research, the chapter provides a basic analysis of ethical issues, including patient autonomy and privacy, without offering in-depth exploration or specific frameworks. Practical advice on balancing data-sharing advantages and ethical concerns is offered, but it lacks specificity. The mention of the shift towards open access and acknowledgement of moral issues such as equity and security is cursory, and the chapter falls short in providing comprehensive analyses or specific case studies to deepen understanding. The exploration of data breaches and informed consent remains limited, making the overall contributions somewhat constrained in addressing the intricate ethical landscape of patient data sharing.