Tagged: #ethnics
- This topic has 16 replies, 13 voices, and was last updated 1 year, 9 months ago by
Tanatorn Tilkanont.
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AuthorPosts
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2022-09-29 at 3:40 pm #38429
Saranath
KeymasterPlease watch the VDO for topic discussion.
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2022-10-08 at 3:07 pm #38585
Kawin Wongthamarin
ParticipantI think that requests for individual information should not be traceable to the identity of the owner of that information. If there is a violation of this section, it is not only unethical, but it is also illegal.
To prevent unlawful and ethical reasons, I would require applicants to reduce their need for too much personal information. Directly identifiable information such as contact information or addresses must be concealed. indirectly identifiable information must be broad enough that it cannot be traced to an individual for instance geolocation must be defined as region-wide enough to not be able to identify a particular home and narrow enough to be useful for research purposes.
I think there must be a contract for what purpose the information will be used. Including explaining how to keep the data safe, when the data will be destroyed after a period of time, And the signing of a non-disclosure agreement.
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2022-10-11 at 2:21 pm #38622
Boonyarat Kanjanapongporn
ParticipantI agree with having contract for information used and privacy guard to clarify necessary of data usage and prevent data leakage.
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2022-10-08 at 5:56 pm #38586
PREUT ASSAWAWORRARIT
ParticipantThe answers for each question are provided below.
1. Should you give the data out?
– No, I cannot give the raw data out to the third party.2. How do you not violate any of the general principles of informatics ethics
– I must respect to fundamental ethical principles, for example, principle of autonomy, principle of equality and justice, principle of beneficence, principle of non-maleficence. Moreover, respect to general principles of informatics ethics is essential. Principle of information privacy and disposition makes the persons have a right to privacy, and this controls over the distribution of information.3. If you want to provide the data to them, what and how will you do it?
– I would like to deidentify our patients by encoding the identification number, hospital number, admission number, age, specific address (address will be provided in area that can serve the purpose of this research). Information I provided to the third party will be that needed for the analysis. I will not provide every detail of the information to the third party.Thank you.
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2022-10-09 at 11:32 am #38599
ABDILLAH FARKHAN
ParticipantIn case my organization owns fully detailed data on Malaria cases, I probably can share the data per person to the researcher but only specific parameters that are relevant to legitimate research with particular procedures. In the public health context, Malaria research may require detailed information such as address or location because investigators usually aim to explore the ecological aspects or to cluster the cases spatially using a GPS system so they will generate knowledge on the dynamic factors affecting Malaria transmission.
If the research is conducted by researchers from outside our jurisdiction, it is important for all investigators to gain approval of registration before they undergo the research and access the data. My Indonesia country has a layering system for international research permission which requires all investigators to comply with the approval from the country coordinating ministerial (for legal aspect) and country ethical committee (for ethical consideration). Therein lies the decision of whether their research can be carried out in my country or not.
To ascertain there is no violation of the General Principles of Informatics Ethics upon my decision, my office which owns the data should have the standard and mechanisms for what type of information is being shared and how to provide safeguards to the shared data. The data standard of Malaria cases is generated through an updated CDC form that is usually used by healthcare providers to register the suspect. As a person in charge of Malaria database, I have a responsibility to select which detail variables can be shared with adherence to appreciate the General Principles of Informatics Ethics although the researchers have already gained adequate legal and ethical letters of access to perform their investigation.
Any specific data will I provide to the investigators is done by taking several steps. First, I need to ask all investigators to confirm their project methods and milestones are in accordance with what did ethical review committee decided on. Second, the vital data that is vulnerable to identity theft such as ID number, social security number, medical history, and phone number will not be provided to the researchers. Third, the investigators need to be tied into a written commitment regarding the data usage since they undergo the research until publishing the knowledge.
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2022-10-11 at 8:56 pm #38635
Siriphak Pongthai
ParticipantThank you for sharing the situation in real world. I think this is such a cautious method of providing data to third party, and protecting individual information in the same time.
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2022-10-10 at 8:31 am #38608
Boonyarat Kanjanapongporn
ParticipantI shouldn’t give data with patients personal identification.
I would support the principle of Information Privacy and Disposition, Principle of Security and Principle of Legitimate Infringement. Data required from the third party such as home address and telephone number could be used to identify the person which can considered as confidential information. If there is leakage of this fragile data, the patient could be in harm either physically or mentally. To support the Informatic Ethic, data shouldn’t be given away to third parties which haven’t declared their research conduct, including use of patient information and privacy support.
If I want to provide data to them, I wouldn’t decide by myself whether to give data or not. I would suggest setting the local investigators or committee in research ethics to assist evaluation of necessary data accessibility and be the witness of data used.
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2022-10-11 at 10:14 am #38615
Zarni Lynn Kyaw
ParticipantIn this scenario, although their proposed study will generate good science and could be benefit for disease prevention and control, that could eventually lead to elimination of the disease in the country, we have to abide by the General Principles of Informatics Ethics which means
1. Should you give the data out?
– We should not give the requested data in details at individual level for each single case covering the disease status, home address, geolocation, contact number because it violate the General Principles of Informatics Ethics.2. How do you not violate any of the general principles of informatics ethics.
– the General Principles of Informatics Ethics dictate principle of autonomy, principle of equality and justice, principle of beneficence, principle of non-maleficence, which means that if we gave the data as requested we will break those principle. Not violating the General Principles of Informatics Ethics will mean that when we give the data it have to be encoded.3. If you want to provide the data to them, what and how will you do it?
– As per the question 2, we will need to encode the data. Encoding and anonymizing the data will make sure that we can still adhere to General Principles of Informatics Ethics as well as generate good science and could be benefit for disease prevention and control. Encoding and anonymizing personally identifiable data like identification number, hospital number, admission number, age, specific address will be critical. As all research should undergo ethical review process, ethical review board should also certify that this research adhere to the General Principles of Informatics Ethics as well. -
2022-10-11 at 9:15 pm #38636
Siriphak Pongthai
Participant1. Should you give the data out?
Answer: No, I definitely will not giving data out of the research’s database to third party.2. How do you not violate any of the general principles of informatics ethics
Answer: As proposed of the study is beneficial for disease prevention and control. I would ask for the scope of study and the necessary of data needed. The data sharing should be limited and should not be identified to individual. Otherwise it could violate general principle of informatics ethics, if we disclose subject’s information inappropriately, and the data was not protected and accessed by third parties that have not mentioned earlier (it is a principle of legitimate infringement).3. If you want to provide the data to them, what and how will you do it?
Answer: I would ask local ethical committees for their advices on how can we provide data to other research ethically and legally.
The information provided should be limited and as needed for analyzing outcomes. In addition, all of identifiable information must be blinded and masked to prevent the disclosure of individual. -
2022-10-12 at 4:10 am #38641
Tanyawat Saisongcroh
Participant1.Should you give the data out?
The answer is no. Disclosure of Protected Health Information (PHI) to the third party even in a good research project could violate Ethical informatics standards and also, has potentially risk for misused and violate the law as HIPAA violation.2.How do you not violate any of the general principles of informatics ethics
In this scenario, as a health informatics professional, I would keep in mind, respect and follow the fundamental and general ethical principle of informatics, especially in respect for subjects, privacy and doing no harm. We have to know and abide by the applicable government regulation and local policies. We are expected to be familiar and follow with a related law and be mindful that we have responsibilities to all the works and action.3.If you want to provide the data to them, what and how will you do it?
As review project proposal, we can provide the aggregate data in sub-district level or other specific data set relevant or perform parallel methodology as multicenter study. The data must be deidentified and encoded and has time-limit use. Research ethical committee or IRB must be approved to research methodology and shared data agreement. And for the public health surveillance, if there are intension to use the data set contain PHI, the disclosure of PHI requires HIPAA security rule compliance. -
2022-10-12 at 5:45 am #38645
Hazem Abouelfetouh
ParticipantIn my opinion, We can provide the data after masking it. This includes masking the home address locations and the contact number as this may not be useful for the new study.
Also, we need to consider if the patients know about using their information in new studies and if this information was included in patients’ informed consent.
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2022-10-12 at 9:10 pm #38679
Kansiri Apinantanakul
ParticipantThank you for sharing.
We used the same way. I think the anonymized data might be the answer of this question. -
2022-10-16 at 7:55 am #38715
Saranath
KeymasterIf the information such as geolocation and contact number are not useful for the study. We don’t need to provide these data to the researcher, right. No need to do masking.
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2022-10-12 at 9:10 pm #38678
Kansiri Apinantanakul
Participant1. Should you give the data out?
For the data they requested. I would say “No” since it contained potentially sensitive information as well as the privacy concern.
2. How do you not violate any of the general principles of informatics ethics
I would not provide the request data to them since this would violate the principle of information privacy and disposition. However, the data may be partially disclosed to align with the principle of openness.
3. If you want to provide the data to them, what and how will you do it?
The anonymized data may be used instead. I believe that the name and address could not be used for analysis anyway. They just need the detailed case information.-
2022-10-24 at 7:11 pm #38833
Tanatorn Tilkanont
ParticipantYes, I do agree with using anonymized data instead when it is not required for analysis. Thank you.
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2022-10-12 at 11:32 pm #38686
SIPPAPAS WANGSRI
Participant1. Should you give the data out?
Absolutely not! I am not the owner of the data, the patient is. Providing such a detailed information is a major risk that could identify the specific person and sharing that is a violation of a HIPAA regulation.2. How do you not violate any of the general principles of informatics ethics (and) 3. If you want to provide the data to them, what and how will you do it?
First, a research team must fill in an official form and make a request through the responsible organisation. They must disclose their scope of study and state their requirements and data specifications through the ethics committee. Then, the data must be encrypted or de-identified/anonymised/pseudonymised prior to distribution and ensure data safeguarding with the HIPAA rule. -
2022-10-24 at 6:48 pm #38832
Tanatorn Tilkanont
ParticipantShould you give the data out? / If you want to provide the data to them, what and how will you do?
Answer: Before sharing the data into the public (or even to other institutes), all collected data need to be tagged and categorized which dataset is personally identifiable information (PII). Data can be shared publicly only those are not categorized as PII. Also, before sharing the data, contract of data usage may need to be considered. So, application of the data need to be bounded by legal considerations, and be sure that development/research methodology would not ethically harmful.How do you not violate any of the General Principle of Informatics Ethics ?
General Principles of Informatics Ethics
1. Principle of Information Privacy and Disposition – Data tagging (or labeling) for personally identifiable informations (PII).
2. Principle of Openness – Develop clear and legit protocol for public data sharing.
3 Principle of Security – Develop System that have high security level and data accessibility authentication system, especially PII.
4. Principle of Access – Setup authority and roles to access data. This could be done by system engineers, software engineers or data engineers.
5. Principle of Legitimate Infringement – Setup authority to edit or change data for data owner. For example, the interviewee is able to delete, correct, or share its own personal data.
6. Principle of the Least Intrusive Alternative – Develop secure authentication system to access to personal information. For example, using OTP or Two-step verification.
7. Principle of Accountability – Develop clear guideline to manage infringement of sensitive data in order to justify data owner.
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