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Based on the given scenario:
Should you give the data out?
No, we should not give individual-level data such as home addresses, geolocation, and contact numbers. If we do this, we will violate the principles of information privacy, security, and least intrusive alternative, as well as accountability on ethical duties to protect confidentiality and prevent harm of individual information.How do you not violate the General Principles of Informatics Ethics?
Principle of Information Privacy and Disposition: we must respect patients’ right to control over their own health data, identifiable data must not be shared without patients’ consent.
Principle of Security: we must ensure strong safeguards for data storage and transfer. Sharing individual-level data increases risks of misuse.
Principle of Legitimate Infringement & Least Intrusive Alternative : If data must be shared, it should be done in the least intrusive way such as providing de-identified or aggregated data.
Principle of Accountability: Any decision must be justified transparently, with documentation of why and how data is shared, and used.If you want to provide the data, what and how will you do it?
If I want to provide the data, I will do the following in accordance with information ethics:
• Seeking for approval and transparency by informing and getting approval from the relevant officials or managers or decision makers as well as beneficiaries/data owners about data sharing and usage, before proceeding data sharing process.
• Asking for ethical approval for the research conducted from the research team to make sure the research will be conducted under the approval of ethical comitte, before research implementation.
• Data aggregation by providing geograhical level or provincial level data instead of individual level data to maintain data confidentiality.
• If individual level data need to be shared, de-identification of patients’ information by removing patients’ identifiable information such as name, address, contact numbers.
• Transparency on data use agreements by documenting how and why the data will be shared and used for the benefits of country disease control. Then, both parties must be signed and agreed accordingly to protect data security and confidentiality. -
Should you give the data out?
No. Sharing identifiable data without consent will violate confidentiality and could cause misuse or harm to patients.
How do you not violate any of the General Principles of Informatics Ethics
Principle of Information Privacy and Disposition: Individuals have the right to control their own health information and cannot be shared without patient consent.
Principle of Legitimate Infringement: Data can be shared only if there is clear justification (e.g., public health emergencies) and if approved by ethics board.
Principle of the Least Intrusive Alternative: Provided data must be anonymized without exposing individuals instead of raw personal data.
Principle of Accountability: Data use agreement and ethics approval must define roles, responsibilities and consequences of misuse.If you want to provide the data to them, what and how will you do it?
If we want to provide the data to them, we have to do the following steps.
1. Seeking approval from ethical board or relevant authority.
2. Anonymization of data by removing identifiable information such as names, address, contact details and limiting the necessary data elements only.
3. Signing a formal data use agreement for how the data will be used and findings must be shared with national health authorities.
4. Sharing data transfer via secure and encrypted channels to make sure that only the relevant parties can access those data. -
In the given scenario, a Western research team is asking data in detail at individual level for each disease case.
1. Should you give the data out?
No, I should not give out detailed personal data directly. It would break data privacy and confidentiality rules.2. How do you not violate any of the General Principles of Informatics Ethics?
I must protect people’s privacy, get proper permission, and share data only in an ethical and legal way. I should make sure the data cannot identify any individual person.3. If you want to provide the data to them, what and how will you do it?
I will first ask approval from the Ministry of Health or relevant authority. Then, I will share only anonymized or aggregated data (without names, addresses, phone numbers, or exact locations). I will also sign a data-sharing agreement that limits how the researchers can use the data. -
1. Should you give the data out?
No, I will not give the data out without free and informed consent of the concerned individuals.2. How do you not violate any of the General Principles of Informatics Ethics?
I will ensure that the study follows the ethical guidelines on research, in particular the Declaration of Helsinki. Local policies and government regulations should also be followed.3. If you want to provide the data to them , what and how will you do it?
First, a data management and sharing plan should be developed before any data collection. The WHO policy and implementation guidance for sharing and reuse of health-related data for research purposes can be used as a guide in developing the plan. Since the researchers need data at the individual level, anonymization or de-identification should be done to protect the identity of the individuals. Free and informed consent of the concerned individuals should also be obtained. -
1) Should you give the data out?
• I will decide not to provide the requested data because it will violate the general principle of informatics ethnic privacy of information. Their requested data is too risky and easily detected the identity of patient like home address and contact list. It is totally against the informatics ethnic without consent.2) If you want to provide the data to them , what and
how will you do it?
• If regarding to benefit of research to prevent disease. I will discuss the national lead to get approval to share with them. After getting approval, I will ensure not to violate the ethical principle of informatics and will make a plan to share without personal disaggregated information. The individual home address and contact inform will be deleted and their representative geo point will be shared for the purpose of disease mapping. I will request the commitment from research team to follow the principle of accountability and the other general principles as well. -
1. Should you give the data out?
No, I cannot give the individual-level data because it contains private information. Sharing it would break privacy rules and ethical principles.2. How do you avoid violating the General Principles of Informatics Ethics?
I must keep all personal information confidential, protect patients’ privacy, ensure the database is secure, and use the data responsibly and honestly.3. If you want to provide the data, what and how will you do it?
I can only give anonymized or grouped information. I would remove names, contact numbers, and exact addresses, provide summaries by village, sub-district, or age group, and make a data-sharing agreement to ensure the data is used only for the approved study.
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