Bioethical analysis of the results: How well do laws and regulations address people’s concerns?

People have concerns, and in democratic societies we expect these concerns to be somehow addressed by the public authorities. In this chapter, we propose to answer two questions. First, in the light of the sociological studies conducted by the ELSAGEN team, what are the main concerns that people in Estonia, Iceland, Sweden and the United Kingdom have regarding large-scale human genetic databases? And secondly, in the light of the research of the legal team, how well have the authorities of Estonia, Iceland, Sweden and the United Kingdom addressed these concerns? After these main considerations, we will conclude by presenting some remarks concerning the limitations of our brief analysis. Trustworthiness as the main concern It appears from the ELSAGEN work that people's main concerns in all four countries centre on the privacy of the citizens and on the trustworthiness of genetic-database operators in serving a valuable social function. As far as we can see, however, a felt need to strike a balance between these private and public concerns tends to make, on the whole, trustworthiness the primary issue. Respect for privacy can be seen as one of the criteria for assessing the goodness and reliability of the activity. According to the sociological surveys of the ELSAGEN team, people's general attitudes towards genetic research and large-scale genetic databases are not particularly hostile. Especially in Estonia, optimism about science can be seen as a prominent force.