Individual and Collective Rights in Genomic Data: Preliminary Questions

Within the past decade, nearly 1/5 of the human genome has been patented by corporations, universities and research institutes. This happened with little in the way of philosophical debate nor ethical inquiry. There are a number of practical, ethical questions raised by this practice which should be explored, and which are introduced here, which should inform debate in the public policy arena regarding the patenting of human genes. Among these issues are: the ontological status of human genes and persons, the ethics of ownership of human parts and information, the practical consequences of undoing the present situation, and issues of justice regarding the practice of bio-prospecting. 1. The Current Conundrum The human genome has been mapped, and daily more of its territory becomes known and understood. Scientists are discovering the complex web of relationships between the four-molecule alphabet and the 3 billion base pairs that comprise our genetic identities, and the ongoing dance of proteins and RNA that results in our individual existences. The map is general, giving us a high level view of the landscape, but it is virgin territory for the most part. We have yet to understand just how the expression of the data that makes us who we are actually occurs. Even so, the outlines of the territories of the map are being claimed, with nearly a quarter of the genome now staked out by various parties, patented against the claims of other newcomers.1 In fact, the ability to stake those claims was largely responsible for the early completion of the Human Genome Project, spurred on by market competitors, and funded by the future value of ownership of DNA sequences and the pharmaceutical promise they hold. Numerous authors have considered the practical and ethical issues involved in granting ownership over parts of the human genome. The range of considerations has spanned concerns over autonomy, dignity, economic efficiency, and other important ethical considerations. Certainly, most people, when confronted with the fact that their genetic