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15-10-2012 | Article

Commission offers recommendations for protecting personal genomic data


Commission report

medwireNews: The advent of cheap and fast whole genome sequencing of individuals holds both the tantalizing promise of truly individualized medicine, and the perils that private information could be laid bare to public eyes, a presidential commission says.

"As the cost to sequence an entire human genome continues to fall, the potential exists for rapid advances in wellness and health care resulting from this new technology. Essential to achieving those advances is the need to share, compare, and pool data. However, as the ease with which the acquisition and sharing of whole genome sequencing information increases, so do questions and concerns about privacy and security," write Amy Gutmann (University of Pennsylvania, Philadelphia) and James Wagner (Emory University, Atlanta, Georgia), respectively the chair and vice-chair of the Presidential Commission for the Study of Bioethical Issues.

In a report titled Privacy and Progress in Whole Genome Sequencing, Gutmann, Wagner, and colleagues in the clinical sciences, medical ethics, and government security offer 12 recommendations for improving the sharing of genomic data among clinicians and researchers while protecting the privacy of individuals and their families.

Among their recommendations is a call for funders, policy makers, and managers of research, clinical, and commercial databases to establish and maintain policies that clearly define access and permissible use of whole genome sequencing data, and that privacy protections should consistently protect data no matter how they are acquired.

"These policies should protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual from whom the sample came," Commission members write.

Additionally, the aforementioned parties must be guided by professional ethical standards and be held accountable for breaches of privacy as defined by state and federal laws, including being subject to fines, sanctions, or imprisonment as specified under the applicable laws, the commission recommends.

The panel also states that individuals whose genomes are sequenced must be informed that incidental findings are likely in the course of sequencing, and call for studies to determine the best way to communicate incidental findings (such as genetic risks for cancer, heart disease, or other disorders) to those who choose to have their innermost genetic secrets revealed.

By Neil Osterweil, medwireNews Reporter