Regulation and use of human genetic information : let the owner beware?

• Main Author: Phua, Aaron Mian Ti.
• Other Authors: Schoenbach Christian Dieter
• Format: Final Year Project
• Language: English
• Published: 2009
• Subjects: DRNTU::Science::Biological sciences
• Online Access: http://hdl.handle.net/10356/18891
• Institution: Nanyang Technological University

Every person has the right to privacy and has to be protected against genetic discrimination. With the increase in the use of genetic tests for research and medicine, there is a need to develop a system to safeguard sensitive human genetic information. This is complicated by consumers getting directly involved in the flow of information with respect to insurance and with the emergence of consumer genomics companies offering non-clinical genetic tests. The impact on insurance may not be obvious now, but steps are being taken to prevent worries and imbalances in the industry, while regulations on consumer genomics companies will protect consumers against false hopes and claims. Individuals have to be mindful of the implications of genetic information and decide carefully on the consent they give for genetic tests. In this study, the current status of individual privacy and confidentiality was evaluated and the measures taken to safeguard the interest of the public were explored. Recommendations were proposed on fine-tuning the current regulations while highlighting the obstacles in implementation. To deal with the ambiguous problem, a multipronged approach involving every level of administration should be used to prevent misuse, as legislation can only assure fundamental privacy rights.