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There are important ethical considerations for the collection and secondary use of health data. While discussions on the ethical collection and use of health data typically focus on research, it is important not to overlook potential data misuse by non-research organizations. [26]
Big data ethics, also known simply as data ethics, refers to systemizing, defending, and recommending concepts of right and wrong conduct in relation to data, in particular personal data. [1] Since the dawn of the Internet the sheer quantity and quality of data has dramatically increased and is continuing to do so exponentially.
It was created to study bio-ethical issues such as the effects of income and residence on the availability of healthcare, the definition of death, patient consent, human research subjects, and genetic engineering, counseling and testing. [1]
The patient health record is the primary legal record documenting the health care services provided to a person in any aspect of the health care system. The term includes routine clinical or office records, records of care in any health related setting, preventive care, lifestyle evaluation, research protocols and various clinical databases.
Critical data studies is the exploration of and engagement with social, cultural, and ethical challenges that arise when working with big data. It is through various unique perspectives and taking a critical approach that this form of study can be practiced. [1]
It has also led to social and ethical issues because basic human rights are considered to be violated by the PCMS, since hospitals and health information services are now more likely to share information with third-party companies. [1] Thus, there needs to be a reformation to specify which hospital personnel have the access to medical records.
This publication laid the groundwork for CIOMS' 1982, 1993, 2002, 2009, and 2016 versions of International Ethical Guidelines for Health-Related Research Involving Humans. [3] These guidelines have been praised for including diverse stakeholders from low- and middle-income countries, compared to the Declaration of Helsinki written by physicians ...
In either case, considerations need to be given to what data will be collected, where the data will be found, and who will do the data collection. Ethical issues must also be considered; the data collected must relate only to the objectives of the audit, and staff and patient confidentiality must be respected – identifiable information must ...