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The great debate, 21st century-style
WASHINGTON, D.C.—Measuring the balance between medical advancement in whole-genome sequencing against individual privacy has become the great scientific debate for this century. The Presidential Commission for the Study of Bioethical Issues, which on Oct. 11 released its report, "Privacy and Progress in Whole Genome Sequencing," states if we start now, the U.S. government, healthcare industry and individuals can do their part and work together to make this happen.
The bottom line, according to the commission, is "to realize the enormous promise that whole-genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must be respected and secured."
As the scientific community works to bring the cost of whole-genome sequencing down from millions of dollars per test to less than the cost of many standard diagnostic tests today, the commission recognizes that whole-genome sequencing and its increased use in research and the clinic could yield major advances in healthcare.
The commission is offering "a dozen timely proactive recommendations that will help craft policies flexible enough to ensure progress and responsive enough to protect privacy," the report states.
"The commission's goal was to find the most feasible ways of reconciling the enormous medical potential of whole- genome sequencing with the pressing privacy and data access issues raised by the rapid emergence of low-cost whole-genome sequencing," says Commission Chair Amy Gutmann, president of the University of Pennsylvania. "The life-saving potential of genome sequencing depends on gathering genetic information from many thousands—perhaps millions—of individuals, most of whom will not directly benefit from the research. Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality. Without such assurance in place, individuals are less likely to voluntarily supply the data that have the potential to benefit us all with life-saving treatments for genetic diseases."
Everyone stands to gain from "our society taking the necessary steps to protect privacy in order to facilitate progress in this era of whole-genome sequencing," she notes.
In an opinion piece for Reuters, Gutmann wrote, "The price of sequencing your whole genome is dropping so rapidly that it soon may cost about $1,000 to know your entire genetic blueprint. Our whole-genome sequence data can reveal predispositions to diabetes, cancer or psychiatric conditions. It can even help a doctor prescribe the right dosage of certain medications. It will soon be less expensive to sequence your entire genome—to know its more than 20,000 genes and six billion DNA building blocks—than to perform some individual genetic tests for cancer or metabolic diseases. The ability to link variations in DNA with health and disease could mean radical new ways to predict and treat not just cancer, but also heart disease, diabetes, Alzheimer's and schizophrenia."
The issue is "these potentially life-saving discoveries depend on large numbers of people sharing their private information to enable researchers to compare large genomic databases with relevant disease states, and sharing data is still far from risk free," Gutmann added. "Individuals are not likely to have confidence in the system until we develop and enact state and federal laws governing the use of genomic sequencing data."
In most states, today, "almost anything goes," she stated. "Someone could legally pick up your discarded coffee cup and send a minuscule sample of your saliva out for sequencing to determine if you show a predisposition to neurodegenerative disease. Surreptitious genetic sequencing of this sort could become a whole new arms race in conflicts ranging from custody cases to boardroom battles—unless we act soon to bring some common sense to regulation.
"By creating a consensus on basic privacy protections and preventing unauthorized genetic testing, we can assure Americans of genetic confidentiality while encouraging our frontline warriors in the fight against disease," Gutmann concluded. "Whole-genome sequencing is a powerful new weapon in the arsenal of 21st Century medicine."