17 - Introduction: ethical questions

Summary

The ethical research in the ELSAGEN project reflects the questions that have been most pressing in the public discussion about human genetic databases: How can we ensure that information about participants in database research will be securely stored? Would it be justifiable to grant insurance companies and employers access to this information? How can we trust the scientists who handle the information to act responsibly? What are the appropriate requirements for consenting to participate in database research? Are we to regard human genetic databases as local or global goods and how can the benefits reaped from database research be fairly distributed?

These and related questions have been intensively debated in the countries where plans have been made to set up population genetic databases. The public debate was most extensive in Iceland, while the discussion has been more limited to academic circles in the UK, Sweden and Estonia. It is understandable that such questions have been at the heart of controversies about database research because the public concerns centre around issues of an ethical nature. While people are willing to advance science, they want to make sure that it will neither harm the participants nor benefit only the researchers.

In the following chapters, the authors analyse the key notions implied in the public concerns in relation to population genetic databases: those of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research.