John A. Robertson
University of Texas Law School
The nearly completed sequence of the human genome is a remarkable achievement. But its potential for preventing and treating disease will be realized only when the genes hidden among 3 billion base pairs of DNA are identified, and drugs and diagnostics derived from them become available. An essential step in identifying genes and developing therapeutic products is using medical and other information to help map and eventually locate genes causing disease. To accomplish this task, large dataseis of genotypic and phenotypic information and bioinformatic tools for massaging that data will be necessary.
A major social challenge in the genomic era is organizing the collection of. DNA samples and medical information needed for this task, and providing access to researchers mining the data for genetic and medical insights. Central to that challenge is the development of ethical software or rules and procedures for ensuring protection of individual rights in genetic and medical information. Recognition of those rights is essential for public acceptance and individual participation in genetic biobanks.
Reassurance about individual rights over their genetic data is also important as we move into an era of genomic medicine, and the collection of individual genetic data in much of routine medical practice. With better knowledge of the molecular basis of disease and individual responsiveness to drugs, many more persons will undergo DNA testing as part of ordinary medical treatment. In some cases, testing will occur to identify susceptibility factors to disease that can be prevented by medical interventions or by lifestyle changes. In many more cases, testing will occur for pharmacogenetic
Bartha Maria Knoppers (éd.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.