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(US/China) When DNA science goes down an unethical path in China, who is responsible? – Medical Xpress (Brittany Meiling, et al | February 2019)0

Posted by Admin in on May 24, 2019
 

New reports that China is using DNA science developed in San Diego County for widespread ethnic surveillance raise ethical questions about who is responsible for how that technology is used.

The New York Times reported recently that Chinese authorities are building a DNA database of the country’s Uighur minority, a predominantly Muslim ethnic group blamed for a series of terrorist attacks in northwestern China.

Since 2016, there have been regular reports of authorities taking blood samples in the Xinjiang region, where ethnic tensions have been rising. The situation has evolved into a Muslim crackdown in China, with nearly one million Uighurs and other minorities reportedly held in “re-education” camps bent on making Muslims more subservient to the Communist Party. There, Uighurs are being forced to hand over genetic samples, which activists worry could later be used by authorities to chase down any Uighurs who resist the indoctrination.

Read the rest of this discussion piece

National Statement on Ethical Conduct in Human Research (2007) – Updated with new link to July 2018 update0

Posted by Admin in on July 12, 2018
 

National Statement 2018 coverThe National Statement is the Australian national reference for human research. It was issued by the NHMRC and has been endorsed by the ARC and UA. The document articulates the four core principles of merit and integrity, beneficence, justice and respect for persons. Specific advice is provided with regard to benefits and risk, informed consent, privacy, methodologies and potential participant populations. Guidance is also provided with regard to the appointment and operation of human research ethics committees, the conduct of ethical reviews, and the responsibilities of institutions. Even though the document has not been enacted compliance with the National Statement is a strict condition of NHMRC and ARC funding.

Since 2014 a joint working group (including appointees from AHEC, the ARC and UA) have been conducting a rolling review of the National Statement. Dr Allen is involved in this rolling review.

In 2015-17 a joint drafting committee (including appointees from AHEC, the ARC and UA) drafted changes and addition to the chapters in Section 3 of the National Statement, as well as corresponding changes to Section 5 and the glossary Dr Allen, Prof Israel and Prof Thomson, are involved in this rolling review.

Access – the PDF copy | the NS page

National Health and Medical Research Council, Australia (2007, updated 2018) National Statement on Ethical Conduct in Human Research. Available at: https://nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018

(Philippines) National Ethical Guidelines for Health and Health-Related Research (PHREB | 2017)0

Posted by Admin in on July 5, 2018
 

Prepared by the Philippine Health Research Ethics Board Ad Hoc Committee for Updating the National Ethical Guidelines

R E S O L U T I O N “RECOGNIZING DR. MARITA V.T. REYES AND THE MEMBERS OF THE AD HOC COMMITTEE FOR THEIR EFFORTS ON THE REVISION OF THE NATIONAL ETHICAL GUIDELINES”

WHEREAS, the Ad Hoc Committee for the Updating of the National Ethical Guidelines was created to update the existing ethical guidelines to ensure adherence to local, national, and international principles and values and respect for Filipino morals and culture;

WHEREAS, the Ad Hoc Committee for the Updating of the National Ethical Guidelines was created on 13 January 2015, with Dr. Marita V.T. Reyes as Chair and the following as members: Dr. Rosario Angeles T. Alora, Dr. Leonardo D. de Castro, Prof. Edlyn B. Jimenez, Dr. Ricardo M. Manalastas, Jr., Dr. Evangeline O. Santos, and Dr. Cecilia V. Tomas;

WHEREAS the Ad Hoc Committee has completed its draft and the Philippine Health Research Ethics Board (PHREB) has approved the National Ethical Guidelines for Health and Health-Related Research 2017 (NEGHHR 2017);

Access the Filippino health research guidelines

Philippine Health Research Ethics Board (2017) National Ethical Guidelines for Health and Health Related Research. Manila: Department of Science and Technology – Philippine Council for Health Research and Development. http://www.ethics.healthresearch.ph/index.php/phoca-downloads/category/4-neg

Rethinking Informed Consent in Biobanking and Biomedical Research: a Taiwanese Aboriginal Perspective and the Implementation of Group Consultation (Papers: Chih-hsing Ho | 2017)0

Posted by Admin in on February 1, 2018
 

Abstract
The current informed consent mechanism is based mainly on the rationale of individualism, particularly for its emphasis on autonomy and self-determination. However, in biobanking and genetic research, research findings may pose a risk of harm to the collective, quite aside from a particular individual. Under this circumstance, individual consent needs to be supplemented by other mechanisms, such as group consent obtained from the relevant group or community. In Taiwan, the inclusion of Taiwanese aborigines in biobanking and genetic research challenges the conventional wisdom of individual consent-taking, which overlooks the significance of collective involvement in decision-making. This paper discusses the rationale of the group consent requirement in Taiwan, which seeks to include Taiwanese aborigines’ perspectives, and the related measures that have been pronounced to implement group consultation. It is further argued that consent procedures should not be transactional in being primarily focused on types of information that is to be communicated. Rather, it should be a process that ensures comprehension, empowerment and trust.

Keywords
Informed consent, Biobanking, Biomedical research. Group consultation, Taiwanese aborigines, Human Subjects Research Act

Ho, C.-h. (2017). “Rethinking Informed Consent in Biobanking and Biomedical Research: a Taiwanese Aboriginal Perspective and the Implementation of Group Consultation.” Asian Bioethics Review 9(4): 353-365.
Publisher (Open Access):  https://link.springer.com/article/10.1007/s41649-017-0037-5

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