With Ms Ya-En Cheng (National Taiwan University)
Series: London Taiwan Seminar, special series on Law and Society in Taiwan
Date: Monday 5 December 2011, 2pm-4pm
Venue: Seligman Library (Room OLD 6.05), London School of Economics (LSE)
Chair: Dr Fang-Long Shih (LSE Taiwan Research Programme)
Discussants: Professor Stephan Feuchtwang (Anthropology, LSE); Reverend John McNeil Scott (LSE Taiwan Research Programme); Professor Tim Murphy (Law, LSE)
This article focuses on the protection of rights in the collection and use of human samples from specific groups, especially indigenous peoples. In the course of either collecting samples or of researching and establishing biobanks or other relevant databases, researchers face many problems relating to informed consent, ownership of samples, the use of derivatives, benefit sharing, and privacy, etc.
A few years ago, Dr Ying-Qin Ge and the National Institute of Health in Taiwan collected samples from indigenous peoples in Taiwan and the Solomon Islands for genetic research into the detection of hyperuricemia (gout). Thereafter, the National Institute of Health tried to patent their research findings in the U.S.A. An international non-profit organization based in Canada has identified and investigated similar cases, and as the result of pressure the Taiwan National Institute of Health eventually wtihdrew its patent application. Another case was that of Dr Marie Lin, transfusion medical research director of Mackay Memorial Hospital, who faced almost the same problem in 2007. Further examples occur constantly around the world.
It is argued that sample collectors who focus on the collecting from specific groups need be more aware of issues around cultural background, stigmatization, group consent and commercialization. They should also be mindful that when biomedical research focuses on a specific group, there is a strong possibility of creating an adverse impact on society's perception of that group. Therefore, regulations and guidelines concerning biomedical and research ethics should be strictly adhered to.
These issues are particularly pertinent to Taiwan: compared with the U.S. or U.K., Taiwan has a smaller but denser population; this makes it easier to identify individuals who provide samples even after the anonymization process. When dealing with minority groups, the problem of a person's identity being easily recognized needs to be considered particularly carefully.
In an era in which biomedical research and technology are progressively developing, this article reviews regulations in Taiwan and other countries relating to bioresearch and biotechnology. It demonstrates that collectors need to be more careful when collecting and using human samples, and should consider the cultural background of the specific groups targeted for research.
About the speaker
Ms Ya-En Cheng is a Master of Laws student at the College of Law, National Taiwan University, having previously studied Political Science at NTU. She is currently interested in Bioethics and Health Law, focusing on Conflict of Interests in Biomedical Research and legal issues around biobanks. She is also currently a research assistant for the Project on the Ethical, Legal and Social Impact of Biomedical Research, sponsored by the National Science Council of Taiwan.
In 2009-10, Ms Cheng was an exchange student at Tübingen University, where she studied German Law and Bioethics. Prior to this, she was a student editor for the NTU Law Journal, with responsibilities for proofreading and for TSSCI and SSCI applications. During the same period, she collected daily legal documents and newspapers relating to the "1979 Poison Oil Incident", for the Taiwan Database for Empirical Legal Studies. Ms Cheng passed the Taiwan Bar Exam in 2011, and is now a volunteer at the Legal Aid Foundation (Taipei Branch).