Cre­at­ing GM ba­bies against med­i­cal ethics

China Daily (Latin America Weekly) - - Views -

Chi­nese Re­searcher He Jiankui’s claim to have used the gene-edit­ing tool CRISPR-Cas9 to mod­ify the CCR5 gene of twin fe­male em­bryos has been met with shock and out­rage across the world of science.

The rea­son: He flouted global con­ven­tions and ig­nored the risks and ethics in mod­i­fy­ing a hu­man gene be­fore birth. His “ex­per­i­ment” even prompted the Chi­nese gov­ern­ment agen­cies to launch an in­ves­ti­ga­tion into his work.

Since germline genome edit­ing oc­curs in a germ cell or em­bryo the changes could also po­ten­tially be passed on, which could lead to risky con­se­quences, such as off-tar­get mu­ta­tion, un­in­tended changes in tar­geted cells, de­vel­op­ment of can­cer and other side ef­fects, ge­nomic edit­ing of hu­man em­bryos — even for ther­a­peu­tic pur­poses — should be com­pletely sus­pended un­til thor­ough re­search proves it is safe for hu­mans and their fu­ture gen­er­a­tions. Oth­er­wise, it would con­sti­tute a tremen­dously risky hu­man ex­per­i­ment.

In the case of He, who re­port­edly used the CRISPR-Cas9 genome-edit­ing tool to seek to dis­able a gene called CCR5 – a pro­tein door­way that al­lows HIV to en­ter a cell – the ex­per­i­ment was ir­re­spon­si­ble and mean­ing­less, be­cause many other ther­a­pies and treat­ments are avail­able to pre­vent HIV trans­mis­sion from a par­ent to child, and he did not ad­dress nec­es­sary med­i­cal needs. In fact, Paula Can­non of the Uni­ver­sity of South­ern Cal­i­for­nia says strains of HIV do not even use the pro­tein CCR5 to en­ter a cell or cells; in­stead, they use an­other pro­tein called CXCR4.

In sum­mary, it is un­eth­i­cal to ex­pose healthy em­bryos to so many known and un­known risks for un­known ben­e­fits.

Germline genome edit­ing could not only lead to many risks for chil­dren and fu­ture gen­er­a­tions, it gives rise to a se­ries of com­mon eth­i­cal is­sues fac­ing hu­mans.

First, with genome edit­ing tech­niques still full of so many known and un­known risks, and ben­e­fits be­ing so un­cer­tain, if the gene-edit­ing tool CRISPR-Cas9 is used to mod­ify the genes of hu­man em­bryos to achieve med­i­cally “cu­ra­tive” re­sults, it would cer­tainly be detri­men­tal to ethics and prin­ci­ples of med­i­cal and sci­en­tific benef­i­cence.

Se­cond, us­ing ge­net­i­cally mod­i­fied re­pro­duc­tion tech­niques would sac­ri­fice an­other eth­i­cal prin­ci­ple of au­ton­omy, and would be against the process of nat­u­ral re­pro­duc­tion. Also, genome edit­ing of hu­man em­bryos even for ther­a­peu­tic pur­poses will com­pro­mise free choice, since it will leave the fu­ture gen­er­a­tions who can af­ford it no choice but to opt for it. Ac­cord­ingly, the dilemma would be who should de­cide and whether that de­ci­sion is jus­ti­fied.

Worse, germline genome edit­ing even for ther­a­peu­tic pur­poses, will even­tu­ally push hu­mans to­ward a slip­pery slope of choos­ing to have “cus­tom­ized” chil­dren, which would cre­ate dis­as­trous eth­i­cal prob­lems for hu­man so­ci­ety.

Once genome edit­ing is used in re­pro­duc­tion, wealthy fam­i­lies would ob­vi­ously opt for it to es­sen­tially have “de­signer” chil­dren”, such as by en­hanc­ing their yet-to-be­born chil­dren’s IQ, ath­letic abil­ity, or even chang­ing the color of their eyes and/or hair, which will lead to a resur­gence of eu­gen­ics that as a move­ment emerged in the early 20th cen­tury. Un­der such cir­cum­stances, poor fam­i­lies will face even more un­fa­vor­able sit­u­a­tions, and dis­crim­i­na­tion against the dis­abled would worsen and in­equal­ity ex­ac­er­bate.

As such, how to ad­dress jus­tice and eq­ui­tabil­ity will be­come both legally and eth­i­cally chal­leng­ing.

Fi­nally, nat­u­ral mu­ta­tion, as a process of ge­netic vari­a­tion es­sen­tial for nat­u­ral se­lec­tion, is a rec­og­nized and ac­cepted process in bi­ol­ogy. In to­tal con­trast, ar­ti­fi­cial mu­ta­tion, fa­cil­i­tated by germline genome edit­ing, which could pass down to fu­ture gen­er­a­tions, is an un­nat­u­ral process.

Will the peo­ple cre­ated through ar­ti­fi­cial mu­ta­tion en­joy as much dig­nity as the oth­ers who are nat­u­rally born? Or will a new class of ge­net­i­cally edited peo­ple emerge, dis­rupt­ing the nat­u­ral progress of hu­man so­ci­ety? This is an­other im­por­tant eth­i­cal is­sue worth con­sid­er­ing.

Given that germline genome edit­ing ap­plied in clin­i­cal re­pro­duc­tion in­volves so many so­cial and eth­i­cal is­sues, we should strengthen in­ter­na­tional gov­er­nance of genome edit­ing re­search and ex­per­i­ment. It’s heart­en­ing to see that the con­clud­ing state­ments is­sued by both the first and se­cond In­ter­na­tional Sum­mit on Hu­man Gene Edit­ing con­sti­tute ba­sic sci­en­tific eth­i­cal norms for ge­netic sci­en­tists. Nev­er­the­less, to es­tab­lish good gov­er­nance in this field, in­ter­na­tional di­a­logue and co­op­er­a­tion among coun­tries and in­ter­na­tional med­i­cal in­sti­tu­tions, such as the World Health Or­ga­ni­za­tion, UN­ESCO and UN Gen­eral Assem­bly, should be reg­u­larly held to spread aware­ness about the dan­gers of germline genome edit­ing.

In the light of un­cer­tain­ties in the field of gene edit­ing, be­fore a com­pre­hen­sive in­ter­na­tional treaty is agreed to by all the coun­tries to gov­ern genome edit­ing re­search and ex­per­i­ment, in­ter­na­tional soft laws such as in­ter­na­tional dec­la­ra­tions and codes of con­duct is­sued by in­ter­na­tional or­ga­ni­za­tions should be fol­lowed so that sci­en­tists and re­searchers do not flout sci­en­tific and med­i­cal ethics and prin­ci­ples.

While ba­sic re­search on CRISPR in cell lines or in so­matic cells should be sup­ported, germline genome edit­ing for clin­i­cal uses should be sub­ject to mora­to­rium un­til it is proved to be safe and ef­fec­tive, and a broad global so­ci­etal con­sen­sus is reached on its use. Af­ter all, germline genome edit­ing could af­fect the de­vel­op­ment of hu­mans and hu­man so­ci­ety as a whole.

The au­thor is direc­tor of the Cen­ter for Global Gov­er­nance and Law, Xi­a­men Uni­ver­sity of Tech­nol­ogy.

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