Ethics of Health Data Sharing
From Digital Culture & Society
Contents |
[edit] Context Statement
Platforms revolve around the creation and distribution of user data. User data shapes business models, which then reflect the values of each individual platform. Many health data platforms chose a financial model in which they profit from selling user data to third parties. The lack of a defined standard for platform transparency and accountability is seemingly justified under the pretense that the platform is contributing to the greater good through medical research. However, the use of health data is often vague, and can be circulated to unwarranted third-parties, which can put a user’s sensitive information at risk. The trade off of the public value of privacy for health research brings the ethics of health data distribution into concern.
[edit] Ethical Sharing of Health Data in Online Platforms
[edit] Article Reference
Riso, B., Tupasela, A., Vears, D., Felzmaan, H., Cockbain, J., Loi, M., Kongsholm, N., Zullo, S., & Rakic, V. (2017, August). Ethical sharing of health data in online platforms – which values should be considered?. Scholars Portal Journals. https://resolver.scholarsportal.info/resolve/21957819/v13inone/nfp_esohdipwvsbc.xml
[edit] Article Link & D.O.I
https://resolver.scholarsportal.info/resolve/21957819/v13inone/nfp_esohdipwvsbc.xml
D.O.I: 10.1186/s40504-017-0060-z
[edit] Context
This article discusses six core values that the author deems to be necessary for ethical health data distribution within Information and Communication Technology platforms (ICT). The author describes the risk of the increasing platformization of medical data as it may be unknowingly shared with unauthorized parties. Although health ICT platforms may have the shared public value of health research, a user's health information is sensitive data which can ultimately impact the user. The article argues that users should have the right to know how and where their data is being used, and additionally be able to manage it in real-time. By reinforcing these core values, platforms could become transparent and secure; allowing for an ethical collection and distribution of data.
[edit] Overview
The author describes an ideal framework for ethical data sharing by defining the six core values of ethical data sharing: scientific value, user protection, facilitation of user agency, trust, benefit, and sustainability. They explain how data collection relies on a relationship between the user and platform shareholders, which is reinforced by the aforementioned values. They identify how different health ICT platforms prioritize different values through their business models, which in turn can compromise the trust and security of their users.
[edit] Strengths and Weaknesses
The strength of this study is how it accounts for multiple factors as to why transparency and accountability may not be feasible. There are complex trade-offs that need to be considered when individual rights versus common good are brought into discussion. A platform could fulfill all the necessary criteria for transparency; allowing for user agency, trust, and security, however it is not a realistic nor sustainable business model for the platform and its investors. Additionally, the study compares the approaches of health data distribution within different nations and analyzes them. None of the platforms are depicted as ideal, and instead each have strengths and weaknesses which demonstrate the trade-off caused by difference in prioritized values. This article's weakness is its small sample size, as it only compares five platforms. Observing a larger sample size would provide better insight and understanding of how data information can be managed on platforms.
[edit] Assessment
This article is effective in communicating the values of platform shareholders. The six core values that the author describes are proven through their analyses of real world ICT health platforms. It demonstrates how different business models prioritize different core values at the expense or benefit of their users. This article would be most helpful to health platform users as an audience because it would inform them of both the risks and benefits of sharing health data; allowing them to make an informed choice as to the platform they choose, and the data that they share.
Mm19wr 00:22, 12 December 2023 (UTC)
[edit] Ownership of Individual-level Health Data, Data Sharing, and Data Governance
[edit] Article Reference
Piasecki, J., & Cheah, P. Y. (2022, October 29). Ownership of individual-level health data, data sharing, and data governance. BioMed Central. https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-022-00848-y#citeas
[edit] Article Link & D.O.I
D.O.I: 10.1186/s12910-022-00848-y
[edit] Context
This article compares the two models of data ownership: privatization postulate (PP), which seeks to privatize data, and common postulate (CP) which advocates for public ownership of health platform data. Both models appeal to different values and moral principles concerning health data ownership. The author instead suggests an alternative which would improve data sharing practices, and allow for individual data governance. A new data governance system would allow for a secure and transparent distribution of information which would benefit all parties who value the public good of health research.
[edit] Overview
The article describes how both postulates (PP and CP) face similar challenges in balancing individual vs public interests (the common goal of health research), respecting the privacy of their data subjects, and mitigating security risks. The author instead proposes a middle-ground in which data is moderated by a Data Access Community (DAC). A DAC would promote equal and secure distribution of user data by governing using a set of communal ideals and interests; allowing open access to health researchers while allowing research participants to maintain anonymity and sovereignty over their data.
[edit] Strengths and Weaknesses
This article excels in identifying the weaknesses of both the PP and CP. Both have the interest of using data for the ‘common good’ while conflicting with the public values of security and anonymity. The weakness of the article is the lack of evidence that proves the effectiveness of health management by DAC’s. It would have been more conclusive to see recent examples of DACs being used for health information management in the real-world to establish that they are capable of moderating user health data effectively.
[edit] Assessment
The article discusses in depth about the issues regarding both private and public data ownership. It provides alternatives to the two that are rarely discussed and considered by the general public. The authors advocate for individual sovereignty over health data through the usage alternatives such as DAC’s, which would allow participants to anonymize and manage their own data. Although the solution seems to be ideal, further research and experimentation should be done regarding the effectiveness of DAC’s before applying this technique at a large scale.
Mm19wr 15:33, 3 December 2023 (EST)
[edit] Privacy in the Age of Big Medical Data
[edit] Article Reference
Price, W. N., & Cohen, I. G. (2019, January 7). Privacy in the age of Medical Big Data. Nature News. https://www.nature.com/articles/s41591-018-0272-7
[edit] Article Link & D.O.I
https://www.nature.com/articles/s41591-018-0272-7#citeas
D.O.I: 10.1038/s41591-018-0272-7
[edit] Context
This article discusses the potential of health information, and how the development tools can be used to help improve patient diagnosis and personalized treatment plans. Although new technologies and platforms allow for better health research, data that is leaked or accessed by unwanted parties lead to consequences such as (mental) vulnerability and discrimination. It also discusses the importance of recognizing equitable data collection which can reduce the likelihood of biases which affect minority groups.
[edit] Overview
This article discusses whether the uses of Electronic Health Records (EHR) violate the privacy of patients. The author discusses the potential benefits of EHR to both the patient and medical research, however EHR's also contain very detailed and sensitive information which can lead to potential privacy violations if mishandled. They argue that privacy laws should be improved as current laws such as the Health Insurance Portability and Accountability Act (HIPAA) are not sufficient in protecting sensitive data. They describe deontological, privacy, and discrimination concerns resulting from the unethical use of health data.
[edit] Strengths and Weaknesses
This article effectively covers issues regarding current health information protection laws by describing the ‘gaps’ within them that leave health platform users vulnerable. For example, it describes how HIPAA does not apply to entities that operate outside it such as the Big 5 (Facebook, Google, Amazon, and Microsoft), which are overtaking the platform environment. It also adeptly covers the many consequences of vulnerability; discussing how these issues even affect people who they are unaware of data misuse through means such as paranoia and discrimination.
[edit] Assessment
This article concisely identifies the issues of current platform legislations. It provides explanations and real-world cases which demonstrate how data can be misused and the potential effects it can have. Factors such as data exploitation are often not taken into consideration by those who utilize health platforms. The cases that the author describes in the article demonstrate the traceability of datasets even when anonymized. This article would be most beneficial to those who utilize health platforms as it would raise awareness about the potential data misuse that could potentially cause harm to themselves and their family members.
Mm19wr 00:21, 12 December 2023 (UTC)
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