Bowing to an outcry from local human rights groups, the National Science Council (NSC) recently froze its project to create a national genetic database. The ethical, legal and social issues resulting from genetic research have generated much debate in Taiwan over the past 10 years. There has been a lack of communication between the NSC and the nation's research institutes, and there remains a lack of awareness among research institutes of the gravity of the issues involved.
It is this lack of awareness and communication that brought about the scandal over falsified stem-cell research results sparked by South Korean cloning expert Hwang Woo-suk. The public outcry in Taiwan underlines the need for adjustments in the way we think about the issues surrounding a genetic database.
Since human genetic research is bound to be highly controversial, it is an area which must be regulated through legislation. Legislation won't solve every problem, but it can regulate and encourage certain patterns of behavior, as well as clarify the main issues in the controversy.
Currently, the tendency is to use the principles of intellectual property rights (IPR) management, and the concepts of informed consent and rights to privacy, as the basis for the consideration of genetic research. But the intention of IPR is to protect exclusive rights within the marketplace, and so is perhaps not best suited for use when we are considering genetic research that deals with the secrets of life itself. In such a field, the full majesty of the law should be used to strike a balance between public and private interests.
At first, it might seem that the principle of informed consent should apply to the establishment of a genetic database. But if we look at the issue more closely, such a principle alone is not suitable for dealing with issues relating to the establishment of a highly centralized genetic database. Such a database presents a basic tension between the public interest and the constitutional rights of the individual.
As to the concept of privacy, under US law, this is linked to the freedom of action and individual rights guaranteed by the Constitution. In Taiwan, under Constitutional Interpretation No. 603, an emphasis is placed on access to information. However, the concept of privacy is limited when dealing with issues relating to the obtaining and transfer of genetic information.
Constitutional Interpretation No. 603 and a public debate about the idea of a genetic database should guide the government and research centers' decisions. For example, the ban on a photo database or personal files of all citizens should stay in place, especially as regards the building of a DNA database. Even if information is catalogued in such a way that the donor remains anonymous, it would remain possible through gathering information from various sources to create complete or at least partial dossiers on individuals. This must be prevented, so that individuals do not incriminate themselves or get labeled based on such a databank. Any attempt to link the genetic database to medical records or household registrations must be strictly forbidden.
The effort to complete a genetic map of all human beings was undertaken to get a better picture of how human life evolved. To achieve this, we should consider what role the Legislative Yuan, the Executive Yuan and the Judicial Yuan are going to play and what citizens can do in order to reach consensus on this matter.