Main Findings

Abstract

Since the completion of the sequencing and mapping of the human genome in April 2003, the potential for genetic medicine to be used as a testing, diagnostic and treatment tool for multiple diseases is becoming a reality. However, because of the predictive nature of genetic diagnosis, there are fears that our future may be determined for us by scientists and medical clinicians. There is concern as to how the information that is obtained from genetic testing will be used by others. This Report analyses the current and future state of genetic medicine, the potential impacts it has on society both now and in the future, and the ethical and legal principles that must be in place to protect human vulnerability and the integrity of the individual.

This Report covers the use of genetic testing before birth, immediately after birth, on children and on whole communities. It explains new genetic tools such as whole genome screening for the benefit of clinicians who may be confronted by these technologies and the public who may wish to use the new technologies. The primary purpose of this report is to be as accurate and accessible as possible regarding just what can and cannot be done with genetic testing technologies. The emphasis is on being as fair as possible in explaining and critiquing the issues that emerge from the use of genetic technologies. The researchers who worked on this report do not come solely from one discipline. This minimises the possibility of one particular mindset – whether it be scientific, ethical, cultural or legal – dominating the analyses and recommendations. We have all worked together and argued extensively about how to interpret our findings and present them in such a way that the public can understand what is at stake in formulating the best possible legal and regulatory frameworks for the use of genetic testing in our society.