The great debate, 21st century-style

Presidential Commission for Study of Bioethical Issues tackles privacy issues in whole-genome sequencing

Lori Lesko
WASHINGTON, D.C.—Measuring thebalance between medical advancement in whole-genome sequencingagainst individual privacy has become the great scientific debate forthis century. The Presidential Commission for the Study of BioethicalIssues, which on Oct. 11 released its report, "Privacy and Progressin Whole Genome Sequencing," states if we start now, the U.S.government, healthcare industry and individuals can do their part andwork together to make this happen.
 
The bottom line, according to thecommission, is "to realize the enormous promise that whole-genomesequencing holds for advancing clinical care and the greater publicgood, individual interests in privacy must be respected and secured."

As the scientific community works tobring the cost of whole-genome sequencing down from millions ofdollars per test to less than the cost of many standard diagnostictests today, the commission recognizes that whole-genome sequencingand its increased use in research and the clinic could yield majoradvances in healthcare.

The commission is offering "a dozentimely proactive recommendations that will help craft policiesflexible enough to ensure progress and responsive enough to protectprivacy," the report states.

"The commission's goal was to findthe most feasible ways of reconciling the enormous medical potentialof whole-genome sequencing with the pressing privacy and data accessissues raised by the rapid emergence of low-cost whole-genomesequencing," says Commission Chair Amy Gutmann, president of theUniversity of Pennsylvania. "The life-saving potential of genomesequencing depends on gathering genetic information from manythousands—perhaps millions—of individuals, most of whom will notdirectly benefit from the research. Those who are willing to sharesome of the most intimate information about themselves for the sakeof medical progress should be assured appropriate confidentiality.Without such assurance in place, individuals are less likely tovoluntarily supply the data that have the potential to benefit us allwith life-saving treatments for genetic diseases."

Everyone stands to gain from "oursociety taking the necessary steps to protect privacy in order tofacilitate progress in this era of whole-genome sequencing," shenotes.

In an opinion piece for Reuters,Gutmann wrote, "The price of sequencing your whole genome isdropping so rapidly that it soon may cost about $1,000 to know yourentire genetic blueprint. Our whole-genome sequence data can revealpredispositions to diabetes, cancer or psychiatric conditions. It caneven help a doctor prescribe the right dosage of certain medications.It will soon be less expensive to sequence your entire genome—toknow its more than 20,000 genes and six billion DNA buildingblocks—than to perform some individual genetic tests for cancer ormetabolic diseases. The ability to link variations in DNA with healthand disease could mean radical new ways to predict and treat not justcancer, but also heart disease, diabetes, Alzheimer's andschizophrenia."

The issue is "these potentiallylife-saving discoveries depend on large numbers of people sharingtheir private information to enable researchers to compare largegenomic databases with relevant disease states, and sharing data isstill far from risk free," Gutmann added. "Individuals are notlikely to have confidence in the system until we develop and enactstate and federal laws governing the use of genomic sequencing data."

In most states, today, "almostanything goes," she stated. "Someone could legally pick up yourdiscarded coffee cup and send a minuscule sample of your saliva outfor sequencing to determine if you show a predisposition toneurodegenerative disease. Surreptitious genetic sequencing of thissort could become a whole new arms race in conflicts ranging fromcustody cases to boardroom battles—unless we act soon to bring somecommon sense to regulation.

"By creating a consensus on basicprivacy protections and preventing unauthorized genetic testing, wecan assure Americans of genetic confidentiality while encouraging ourfrontline warriors in the fight against disease," Gutmannconcluded. "Whole-genome sequencing is a powerful new weapon in thearsenal of 21st Century medicine."



Lori Lesko

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