What NOW? The time after the sequencing of the human genome

Dr. Gregor Wolbring, Dept. of Biochemistry and Molecular Biology

Faculty of Medicine University of Calgary 3330 Hospital Drive NW T2N 4N1

Calgary, Alberta, Canada; e-mail gwolbrin@ucalgary.ca;

webpage: http://www.thalidomide.ca/gwolbring

Founder and Coordinator of the International Network on Bioethics and Disability

and Adjunct Assistant Professor at the Dept. of Community Rehabilitation and Disability Studies Faculty of Education University of Calgary

Bio/gene technology research is developing at breathtaking speed. But what to do with it? The claim is that this new knowledge will be used for the good of human kind. But who decides what is good for human kind? Which social groups are shaping the research agenda, government policies and public debate and education? It is claimed that the new knowledge will help eradicating diseases and suffering. But who decides what is a disease which gene is a 'defect' in need of fixing and who decides what is suffering? Who will be able to afford the fixing? Who will own the access to the use of the new knowledge? Who will control the access? What are the options for the ones who can't afford the fixing? What will be the impact on people whose characteristics are targeted by the development and use of predictive tests. Can the targeting of a characteristic be limited to prebirth time frames? Can there be a distinction between genetic cure and genetic deselection? Can there be a distinction between genetic deselection (negative eugenics) and genetic enhancement (positive eugenics)? Why stop at biological enhancement? These are the questions I will try to address in my presentation.