The Char­lie Gard case threat­ens all par­ents

USA TODAY International Edition - - NEWS - Melissa Moschella

Would ex­per­i­men­tal med­i­cal treat­ment be in Char­lie Gard’s best in­ter­ests? Or should he be taken off of life sup­port and al­lowed to die?

From a med­i­cal ethics per­spec­tive, both cour­ses of ac­tion are per­mis­si­ble in prin­ci­ple. If Char­lie were an adult and had made his wishes known, those wishes would be fol­lowed without con­tro­versy. An adult pa­tient would never be barred from seek­ing fur­ther treat­ment ( no mat­ter how small or un­cer­tain the prospec­tive ben­e­fit) from a doc­tor will­ing to pro­vide it, es­pe­cially if he had the money to pay for it him­self.

This case, then, is not re­ally about Char­lie’s best in­ter­ests. Af­ter all, rea­son­able peo­ple can dis­agree about what is best for Char­lie. Rather, the real ques­tion at is­sue in this case is: Who has the right to de­cide his fate?

Should it be the Ormond Street Hospi­tal doc­tors, who claim that noth­ing else can be done to treat Char­lie’s rare mi­to­chon­drial dis­ease? Should it be Mi­chio Hi­rano of Columbia Univer­sity, the doc­tor who planned to ex­am­ine Char­lie on Mon­day af­ter tes­ti­fy­ing last week that the ex­per­i­men­tal ther­apy has an 11% to 56% chance of im­prov­ing his con­di­tion? Should it be Jus­tice Nicholas Fran­cis of the Bri­tish High Court, who ( at least so far) has agreed with the Ormond Street doc­tors that fur­ther treat­ment will not ben­e­fit Char­lie, but rather will only pro­long his suf­fer­ing?

The an­swer is fairly ob­vi­ous: It should be Char­lie’s par­ents. They are the ones most di­rectly re­spon­si­ble for him, most in­vested in his well- be­ing and most pro­foundly af­fected by his fate. The pri­mary author­ity of par­ents to make de­ci­sions on their chil­dren’s be­half is widely rec­og­nized as a mat­ter of prin­ci­ple and ex­plic­itly ar­tic­u­lated in law. The United State Supreme Court has rec­og­nized the rights of par­ents. The Euro­pean Con­ven­tion of Hu­man Rights and the Uni­ver­sal Dec­la­ra­tion of Hu­man Rights like­wise rec­og­nize the right to be free from ar­bi­trary in­ter­fer­ence in pri­vate and fam­ily life.

The state could right­fully in­ter­vene on Char­lie’s be­half if his par­ents were abu­sive or ne­glect­ful, but there is not even a ques­tion of that in this case. In pro­hibit­ing this treat­ment on the ba­sis of its con­tro­ver­sial judg­ment about Char­lie’s best in­ter­ests, the state is clearly tres­pass­ing into the realm of parental author­ity and fam­ily life.

The de­ci­sions of the Bri­tish courts have been met with scathing crit­i­cism, largely out of sym­pa­thy for the plight of Char­lie and his par­ents. Hope­fully, Hi­rano’s tes­ti­mony and per­sonal ex­am­i­na­tion of Char­lie will per­suade Jus­tice Fran­cis to change his mind.

Yet con­cern for Char­lie and his par­ents is not the only rea­son for crit­i­cism. Every­one should be wor­ried about the prece­dent this case sets with re­gard to the usurpa­tion of parental author­ity and loss of fam­ily pri­vacy. This fight is not only about Char­lie’s fate but also about pro­tect­ing the rights of all par­ents to or­der their fam­ily life and ful­fill their child- rear­ing re­spon­si­bil­i­ties, free from the con­stant su­per­vi­sion and in­tru­sion of an over­ween­ing state.

Melissa Moschella is As­sis­tant Pro­fes­sor of Med­i­cal Ethics at Columbia Univer­sity and au­thor of To Whom Do Chil­dren Be­long? Parental Rights, Civic Ed­u­ca­tion and Chil­dren’s Au­ton­omy.

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