Week 5 Topic 4 Ethics-2

[Saranath]

Please watch the VDO for topic discussion.

• This topic was modified 3 years, 11 months ago by admin.
• This topic was modified 3 years, 11 months ago by admin.
• This topic was modified 3 years, 11 months ago by admin.
• This topic was modified 3 years, 11 months ago by admin.
• This topic was modified 3 years, 11 months ago by admin.
• This topic was modified 3 years, 11 months ago by admin.
• This topic was modified 3 years, 11 months ago by admin.

[Ameen]

I think there are chances for the project to give the data out for another project and it’s not against the ethical. The difference between legal and ethical is that there is no punishment for doing against the later, except maybe the social sanction from the peer community. It’s all about moral practice. Research should already have foreseen some opportunities for the project in advance to be able to contribute all collected data and result in the academic and scientific community. The consent given by the objects should already be mentioned about the access, use, manipulation, communication of the data, not only for the project but the related project in the future. The objects should know about this and be asked to give consent in advance. The practices, later, is to be in line with the 1st principle under the 6th – 7th. The data access must be ‘in’ not ‘out’ the primary project in a limited way of access and only for data needed for objects of the secondary project.

• This reply was modified 3 years, 10 months ago by Ameen.

[Pacharapol Withayasakpunt]

Generally, no. Unless I notify the client that the data will be given out, and given chance to participate or withdraw from the project, in order not to violate the Principle of Privacy.

Unless a legal framework is already set, so that the consent is already possible in advance.

[Chalermphon]

I think same with Pacharapol because malaria disease is the Clearance diseases of Thailand. Disclosure of patients can open a joint agreement to disclose information before data collected.

[w.thanachol]

This research could benefit the country thus this information should be provided to this research. However, we could protect the data privacy by encrypting the identification data such as name, citizen number and telephone number. In case, they need to contact the case, we should negotiate them to contact through the hospital instead of contact them directly.

[Pyae Phyo Aung]

I should not directly give the data out. But there are other ways to provide the data to the researchers.
Not to violate the General Principles of Informatics Ethics, data should be given by authorized persons or patients.

If I want to provide the data to them, I should inform the authorized person about this condition. At the beginning of the data collection, patients are already informed why the data is collected and why data is collected. If the authorized person make decision to share the data to researchers, it is ethical.

[Ameen]

Hi Pyae … I agreed that we should not give the data out of the “project” in a way that the data released from the project must be limited and under the supervision of the project following their primary consent…if they want anything more than what already outlined in the consent in first place… they must find another consent from the subjects…another point is that the foreign project follows research ethics the same as us.

• This reply was modified 3 years, 10 months ago by Ameen.

[supawat.cht]

I will not give the data and I will ask for the permission from Thai government and Thai EC approval. However, I understand the good science of the study and I will give the contact address to facilitate the study. Moreover, the detail of the requested data need to clarify to the Thai EC.

[tullaya.sita]

I’m not sure whether during the data collection include the consent from the patient to reveal their data for future research or not? If there were any consent to use their data for future research, it is ethical to give the data that matched to the consent that obtains before collecting data. But if you did not receive the consent before collection, you cannot provide the data to the research team.
If you think this research will have positive impacts on treatment of this disease. After the project is approved by ethics committee, you can help them by provide the national database in the area of their interest and then the research team contacts the patient directly to obtain the consent before use patient’s data.

[Ameen]

Hi Tullaya….I think doing research is nothing if we don’t spread out the result and collected data to our peer community…that’s why the academic journals are so important to make an advancement in scientific development…I think the ethics committee may have solutions for us to do that while still comply with research ethics

[tullaya.sita]

I’m not sure whether during the data collection include the consent from the patient to reveal their data for future research or not? If there were any consent to use their data for future research, it is ethical to give the data that matched to the consent that obtains before collecting data. But if you did not receive the consent before collection, you cannot provide the data to the research team.
If you think this research will have positive impacts on treatment of this disease. After the project is approved by the ethics committee, you can help them by providing the national database in the area of their interest and then the research team contacts the patient directly to obtain the consent before use patient’s data.

[THONGCHAI]

I can not put the malaria data out because the raw data may harm to patient and protect by fundamental principle of privacy.

[Penpitcha Thawong]

Firstly, we need to check with the consent form, but in general, most of the consent form always include the information of do not share any private information that can identify to the patients. If it is very necessary and they need to use that information, we need to contact to the patients or clients to do the new consent form.

[imktd8]

I agree with K’Thanachol, this research could be benefit for disease prevention Malaria in Thailand context. I have to inform my lead to know and approve to provide data to a research team. For data they request, if it’s in details at individual level, for example, home address, geolocation, contact no. In my opinion, I think that to analyze the pattern or modem by geolocation factor, they don’t need an individual detail such as name, surname, contact no. We should to discuss about data that a research team really need to use in their research clearly and I should clean data before sent to them. This can help to protect their personal credential data.

[Dr.Watcharee Arunsodsai]

Again the same as previous case scenario, even I are in charge of national database collecting individual data in malaria among local and migrant patients, I could not give the individual data in details without the fundamental principle of information privacy and disposition. This is miss-conduct of the regulation for data protection in general principle of data integrity and confidentiality.
It would be permissible to give the aggregate data at village or sub-district level but if they request individual details, then we need to pass the approval of institutional ethical committee and get the informed consent from individual case. This process will ensure us not to violate any of general principles of medical informatics ethics, then we have the obligation to disclose the details of each single case.

[weerawan.hat]

I think I can give the data out, if the research team has already got the approval from national IRB. It is appropriate to release information for public purposes. I will not give them the data that can track to each case identity to protect their privacy and security.

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