ABSTRACT

As the editors of this volume, in this concluding section we will take the opportunity to look back on the various chapters and to highlight some of the most significant conclusions. There are some points that have been clarified and there are still many open questions. Some remain open because they could not be resolved in this book, others have become open through what has been written here and some questions are raised by the dynamics of techno-scientific developments that continue to change the face of genetic medicine and transform the medical and social use of genetic information. The power of these developments should not be underestimated. The ethics of genetic medicine is not in the least the ethics of a field of practice that is already well established and known. The area is evolving rapidly and in directions that can barely be foreseen at the present point in history. Some of the most recent developments in the field demonstrate the speed and fluidity of the development. For instance it has now become possible to sequence the complete genome of a human individual within a few weeks, whereas the first two complete genome sequencing projects took several years. Less than a decade ago, it took hundreds of millions of dollars to sequence a single human genome, but according to present estimates, the cost of the total sequencing of a genome will drop to about 10,000 US-Dollars (Pennisi 2008). But why not focus on health, pick out the most relevant parts of the genome and test them? The cost of whole-genome scans that look at hundreds of thousands or millions of small individual variations in the DNA sequence has fallen to several hundred US dollars. A few months ago, when we drafted the introduction to the book, it was still more than a thousand. Personal genomics has become affordable for many, and competition between companies continues to work in the direction of reducing price and increasing availability. These tests can be individually ordered, not over the counter in the local pharmacy or in a supermarket, but over the Internet, which is special in many ways. First of all it means two things: it is possible to know genetic profiles without personal contact with a counsellor, and it is possible to order them from anywhere in the world. The scan principle, which allows testing for tens of thousands of genetic traits at once, will soon also be offered, applied and somehow also regulated by laws and best practice guidelines, in prenatal and preimplantation genetic testing. We could enumerate many more such rapid developments.