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By John A. Robertson
The American Journal of Bioethics :: Volume 3 Number 2
Progress in gene sequencing could make rapid whole genome sequencing of individuals affordable to millions of persons and useful for many purposes in a future era of genomic medicine. Using the idea of $1000 genome as a focus, this article reviews the main technical, ethical, and legal issues that must be resolved to make mass genotyping of individuals cost-effective and ethically acceptable. It presents the case for individual ownership of a person's genome and its information, and shows the implications of that position for rights to informed consent and privacy over sequencing, testing, and disclosing genomic information about identifiable individuals. Legal recognition of a person's right to control his or her genome and the information that it contains is essential for further progress in applying genomic discoveries to human lives.
For the full article please visit http://www.bioethics.net/journal/infocus.php?vol=3&issue=3&articleID=108.
John A. Robertson has written and lectured widely on law and bioethical issues. He is the author of two books in bioethics and numerous articles on reproductive rights, genetics, organ transplantation, and human experimentation. He has served on or been a consultant to many national bioethics advisory bodies, and is currently Chair of the Ethics Committee of the American Society for Reproductive Medicine.