Obtaining a complete transcript of a person’s DNA is getting faster and cheaper, raising ethical and privacy questions that the government must examine, a U.S. presidential commission said.
The panel said today it wants public input on developments in human genome sequencing, including how to balance individual privacy against societal benefits. The Commission for the Study of Bioethical Issues, an advisory panel set up in 2009, plans to send President Barack Obama a report by the end of the year.
“Relatively inexpensive, rapid sequencing of whole human genomes appears not only likely, but imminent,” the commission said in a filing. “This prospect raises many questions for the scientific, medical, ethics and patient communities related to how this information can and ought” to be used and regulated.
Translating an entire human genome required more than a decade of research and billions of dollars by the government’s Human Genome Project, which completed the first sequence in 2003. Now, Oxford Nanopore Technologies Ltd. plans to sell a genome sequencer the size of a USB memory stick for $900 by the end of this year and companies including Life Technologies Corp. (LIFE:US) and Illumina Inc. (ILMN:US) promise genomes sequenced in a day.
“It’s going to be hard to put a one-size-fits all regulation on this,” said Sharon Terry, chief executive officer of Genetic Alliance, a Washington-based group that advocates for expanded use of genetic data in medicine. Guidance and clinical- practice suggestions “would be quite useful,” she said.
Public comments are due by May 25, and the panel plans to spend six months on its research. The result may be government guidance on how the tests are used and how the data they produce are shared with patients, Terry said in a telephone interview.
While cheap and quick testing means people can find out earlier about predisposition to diseases, they “might worry about things that are not completely solid in their evidence,” she said.
Patients should be encouraged to share their genetic information and medical history with researchers, “so we do understand what it means,” Terry said. Her group supports giving individuals final say over use of their data.
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