Large-scale whole genome sequencing (WGS) studies promise to revolutionize cancer research by identifying targets for therapy and by discovering molecular biomarkers to aid early diagnosis, to better determine prognosis and to improve treatment response prediction. Such projects raise a number of ethical, legal, and social (ELS) issues that should be considered. In this study, we set out to discover how these issues are being handled across different jurisdictions.

In this article, we explore the concept of a “right not to know” on a population rather than individual level. We argue that a population level “right not to know” is a useful concept for helping to define the appropriate boundaries of public engagement initiatives in the emerging public health genomics context.

While the realm of bioethics has traditionally focused on the rights of the individual and held autonomy as a defining principle, public health ethics has at its core a commitment to the promotion of the common good. While these two domains may at times conflict, concepts arising in one may also be informative for concepts arising in the other. One example of this is the concept of a “right not to know.” Recent debate suggests that just as there is a (...) “right to know” information about one's genetic status, there is a parallel “right not to know” when it comes to genetic information that if communicated, could be detrimental to an individual's social or psychological well-being. As new genetic technologies continue to change the nature of genetic testing and screening, it is crucial that normative frameworks to guide and assess genetic public health initiatives be developed. In this context, the question of whether a “right not to know” may also be said to exist for populations on a public health level merits attention. (shrink)