HGM2002 Poster Abstracts: 5. Ethics: Human Genome Databases - Ethical Legal and Social Aspects
POSTER NO: 253
Should the guidelines for genetic databases be different in Asia?
Darryl R.J. Macer
Genetic databases are being formed in all countries that conduct genetic research. Some of this research is conducted by local researchers, while other research by outsiders, such as foreign academic collaborators and multinational companies. This raises fundamental questions about whether the standards used for protection of the ethical, social and legal aspects in entry, storage, and retrieval of data from a database should be universal or local.
Bioethics is both a word and a concept. The word comes to us only from 1970 in the West, yet the concept comes from human heritage thousands of years old in every culture. Do these cultures make differences in the way we ask questions about the ethical, social and legal aspects of human genetics? Do the cultural differences mean we have different answers? In the age of a global human genome project, and of giant databases, we have to consider these questions. The findings of numerous opinion surveys and interviews among persons in different cultures let us see how concepts such as autonomy, justice, beneficence and do no harm, are used in making decisions when faced with moral dilemmas. Some earlier surveys I have conducted suggest countries in Asia have greater enthusiasm for certain techniques, and different concerns about privacy of genetic data. However perhaps the inter-cultural differences are less than the diversity we see within a society, for example, if we are followers of the philosophy of Mo Tsu or Confucius, Gandhi or Kant. These issues will be discussed, and some conclusions made on how we might develop policy to reflect the diversity of views, and reasons for those views, that people have.
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