With advances in gene technology surging forward, the government is developing plans for a biobank. The Department of Health is trying to find companies to take on this project, which will cost around NT$500 million (US$15.6 million). The biobank will be an important platform for gathering and analyzing gene information about the population, and will become a very important part of the infrastructure supporting the Taiwanese people's right to health and the development of the nation's biotech industry.
One condition for success is that the biobank must be trusted by the public. It will be necessary to offer the public a comprehensive explanation of the biobank's mechanisms, and let both laymen and academics monitor and participate in the operations of these mechanisms.
Guaranteeing people's privacy and basing the establishment of the biobank, as well as its practical direction, on decisions derived from public consensus mechanisms, are all aspects that will help lay a solid foundation for the development of the biotech field. The project should be based on democratic participation and trust.
First, because an understanding of gene sequences implies gaining access to the most intimate information about individuals and groups, the organization of the biobank will require very strict and diverse secrecy measures, as well as the creation of a secure certification system using strict secrecy principles to provide guarantees for individual privacy.
Second, to meet demands for individual privacy, the examination of gene data will use groups as the unit for analysis. This means that the results, positive or negative, will concern the group as a whole. As a result, the most difficult challenge will be to win the public's trust by building a mechanism for group consent.
In addition, realistic mechanisms should be put in place to deal with research results, such as new knowledge or profits, in order to reward the groups that provided the research material. These rewards should not only include freedom from harm such as defamation. More important is the possibility to share in the fruits of the research, in particular establishing reward mechanisms that provide substantial benefits, commensurate with risks. This will also be the major incentive to motivate group consent.
The reason for giving precedence to group consent over individual consent from members of the targeted communities is that individual consent will not be sufficient to establish gene data regarding the Taiwanese people.
The most important concern for the biobank will be how to define communities. They can be divided into communities representing all Taiwanese, communities from specific regions or race categories, or communities with a particular disease or gene. Defining different communities implies different applications for research results.
The purpose of a data bank representing the population as a whole is to further public health, but it is also easy to cause harm -- data leaks, for example, could expose the Taiwanese people to gene-based biotech terror attacks.
For people in a particular region, or members of the Minnan, Hakka or other communities, group consent should be obtained from the community concerned in order to guarantee its best interests. When dealing with particular diseases, patient groups and their relatives should be allowed to share in the fruits of the research results, and these groups should also be asked to provide group consent.
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