A way for­ward in gene edit­ing

A panel of CRISPR ex­perts sets guide­lines for re­search on hu­mans.

The Washington Post Sunday - - SUNDAY OPINION -

THE 1997 FILM “Gat­taca” pre­dicted a near fu­ture in which cities are pow­ered by vast so­lar ther­mal ar­rays, hu­mans launch manned mis­sions to Saturn’s moons, and doc­tors de­sign su­per smart and strong ba­bies. A gen­er­a­tion later, it is the gene edit­ing that is proving most pre­scient.

Over the past decade, huge ad­vances in ge­need­it­ing tech­niques have en­abled re­searchers to slice up and re­write DNA with in­cred­i­ble pre­ci­sion. At the fore­front of the en­su­ing rev­o­lu­tion is the CRISPRCas9, a technology de­rived from bac­te­ria that en­ables sci­en­tists to snip and re­pair DNA, nu­cleo­tide by nu­cleo­tide, quickly and cheaply. The po­ten­tial uses are vast. And so are the eth­i­cal quan­daries.

The Na­tional Acad­e­mies of Sciences and the Na­tional Academy of Medicine con­vened a panel to rec­om­mend guide­lines for the use of pow­er­ful ge­need­it­ing tools. The re­sults, re­leased last week, are thought­ful and should — for the mo­ment, any­way — chan­nel re­search and test­ing in un­am­bigu­ously pos­i­tive di­rec­tions.

CRISPR can be used in ba­sic lab­o­ra­tory re­search, re­veal­ing how dis­ease works on the molec­u­lar level. This is sim­i­lar enough to other types of lab re­search that it re­quires no novel sci­en­tific or eth­i­cal stan­dards. Re­searchers can also treat live hu­mans with gene edit­ing tech­nolo­gies, for ex­am­ple by tak­ing im­mune cells out of the body, al­ter­ing them and re-in­sert­ing them to fight an ad­vanced can­cer. Ther­a­pies such as these are al­ready un­der de­vel­op­ment, and al­though re­searchers have to be cautious about “off-tar­get” gene slic­ing, ex­ist­ing rules gov­ern­ing the de­vel­op­ment of med­i­cal treat­ments should suf­fice.

The ethics get much trick­ier when re­searchers want to change the DNA in re­pro­duc­tive cells, which would al­ter the genes that par­ents pass to chil­dren, for­ever. Do­ing so could pre­vent vast amounts of hu­man suf­fer­ing. But there is a prob­lem of con­sent: Fu­ture gen­er­a­tions have no say in their al­ter­ation. Dis­abil­ity com­mu­ni­ties would no doubt feel threat­ened and stig­ma­tized, be­cause gene edit­ing could be used to es­sen­tially re­move their type from the gene pool. Changes made to en­hance hu­man off­spring, rather than sim­ply to com­bat dis­ease and dis­abil­ity, could re­de­fine what it means to be hu­man, while those to whom these tech­niques are un­avail­able would risk be­com­ing a ge­netic un­der­class. A line would have to be drawn be­tween her­i­ta­ble changes that are clearly valu­able and those that risk un­nec­es­sar­ily hu­mil­i­at­ing peo­ple, desta­bi­liz­ing so­ci­ety and chang­ing the na­ture of hu­man­ity.

The panel at­tempted to draw a pre­lim­i­nary line — and put it in the right place. Her­i­ta­ble changes should be at­tempted only when sci­en­tists are con­vinced that spe­cific genes cause or strongly pre­dis­pose peo­ple to get­ting a se­ri­ous dis­ease or a con­di­tion, and when they know what nor­mal ge­netic code should look like. They should only in­ter­vene when there are no rea­son­able al­ter­na­tives avail­able to fam­i­lies, and when real-world ev­i­dence shows that the ben­e­fits out­weigh the risks.

The de­bate will not — and should not — end there. But be­fore so­ci­ety has a full chance to process these ques­tions, the panel’s ap­proach is the right one. The goal should be to stop crip­pling dis­eases, not to build de­signer ba­bies.

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