Creating a More Responsible Public Dialogue About the Social, Ethical, and Legal Aspects of Genomics

Abstract

Most would agree that we need a better informed and more rational public dialogue about genomics research, including cloning for therapeutic stem cell research, genetic testing, and somatic genetic therapy. The current moratorium on genetic therapy in human beings, and the recent legislation banning therapeutic use of cloning stem cells, invites a new dialogue between scientists and society in order to examine social goods, risks, and benefits of the current genomics research program. However, public dialogue is hampered by confusion and little awareness of the ways social and scientific concerns interact in the public debate. The science of genomics creates public disclosive spaces in the media and society in general that influence people’s ways of understanding themselves and scientific agendas. Science itself is embedded in our social worlds and imbued with meanings and goals that are social. Society and the media create symbolic and mythic structures around scientif ic constructs, so that it becomes hard to think about the constructs strictly in “scientific” terms or strictly in terms of ethical and social concerns. For example, people request genetic tests, believing that the tests for APOE and PSI will reveal their possible risk of developing Alzheimer’s disease, though these tests are not truly predictive and currently such testing is limited to those who already have symptoms of dementia. 1