testing the limits of the ‘joint account’ model of genetic information

Journal(of(Medical(Ethics,(41((5),(p.(379(‘Testing(the(limits(of(the('joint(account'(model(of(genetic(information:(a(legal(thought(experiment’(

Testing(the(limits(of(the(‘joint(account’(model(of(genetic(information:((a(legal(thought(experiment(

(( ( Charles(Foster1,(Jonathan(Herring2,(Magnus(Boyd3(((Author(Affiliations((( ( 1The(Ethox(Centre,(University(of(Oxford,(Oxford,(UK(( ( 2Faculty(of(Law,(University(of(Oxford,(Oxford,(UK(( ( 3Schillings,(Solicitors,(London,(UK((Correspondence(to�((Dr(Charles(Foster,(The(Ethox(Centre,(University(of(Oxford,(Oxford(OX3(7LF,(UKT([email protected]((( ( ((Abstract((We(examine(the(likely(reception(in(the(courtroom(of(the(‘joint(account’(model(of(genetic(confidentiality.( We( conclude( that( the( model,( as( modified( by( Gilbar( and( others,( is(workable( and( reflects,( better( than( more( conventional( legal( approaches,( both( the(biological(and(psychological(realities(and(the(obligations(owed(under(Articles(8(and(10(of(the(European(Convention(on(Human(Rights((ECHR).(((Introduction((Consider(the(following.(There(is(a(pair(of(identical(twins,(X(and(Y.(Both(are(nationally(known(celebrities.(In(the(course(of(medical(investigations,(it(is(discovered(that(X(has(a(degenerative(genetic(condition(that(will(soon(result(in(his(death.(This(means(that(Y(has(the(same(condition(and(the(same(prognosis.(Y(learns(that(X(is(intending(to(tell(the(media(that(he,(X,(has(the(condition.(This(will(necessarily(mean(disclosure(to(the(public(of(Y's(condition(and(prognosis(too.(Y(does(not(want(this(information(to(be(disclosed.(He(consults(lawyers,(asking(them(to(obtain(an(injunction(restraining(X(from(disclosing(the(information.(X's(lawyers(simply(respond:(“The$information$X$intends$to$disclose$is$information$about$himself.$He$can$do$with$that$information$what$he$wishes”.$(Y's( lawyers,( who( have( recently( been( on( a( bioethics( course,( retort:( “The$ genetic$information$X$wishes$to$disclose$is$not$his$alone.$It$is$shared$with$Y.$It$is$held$in$a$joint$account.$The$legal$effect$of$that$joint$ownership$may$be$that$the$information$cannot$be$disclosed$without$the$consent$of$both$signatories$to$the$account”.((Much(autobiographical(information(is(shared(information.(Autobiographies(are(full(of(details( of( the( way( that( A( related( to( B.( Can( B( object( to( A( telling( the( story( of( her(relationship( with( A?( The( answer,( in( some( contexts,( is( yes.(Many( celebrities( have(


obtained( ‘supereinjunctions’( whose( purported( effect( is( to( stop( publication( of( their(lovers’(side(of(the(story.(Where(such(an(injunction(has(been(granted,(a(lover(cannot(say:( “My$ relationship$with$ that$ footballer$ is$ part$ of$my$ personal$ history.$ I$ have$ an$absolute$ right$ to$do$what$ I$ like$with$ the$ information$about$my$private$ life”.( In( those(cases(the(‘joint(account’(model(has(effectively(been(upheld.(Is(this(any(different(from(the(case(of(X(and(Y?((The(supereinjunction(cases(are(unusual.(Before(returning(to(the(case(of(X(and(Y((the(purpose(of(which(is(to(see(how(the(law(would(approach(the(notion(of(the(‘joint(account’(in(a(genetic(context),(we(need(to(look(at(the(legal(basis(for(restraining(publication(of(any(information.((Straightforward(medical(confidentiality(cases(are(decided(by(determining(whether(the(public(interest(in(disclosure(is(outweighed(by(the(public(interest(in(nonedisclosure.(The(balancing(exercise(is(these(days(often(expressed(in(terms(of(resolving(the(competing(interests(described(by(Article(8(of(the(European(Convention(on(Human(Rights((ECHR).(Article(8(1)(right(broadly(gives(a(right(to(freedom(from(interference(with(one's(right(to(lead(one's(life(in(the(way(one(chooses.(Article(8(2)(qualifies(that(right,(saying(that(the(8(1)( shall( not( be( interfered(with( except( insofar( as( is( necessary( in( order( to( protect(various(societal(interests.(Thus,(for(example,(it(is(prima(facie(a(breach(of(Article(8(1)(to(disclose(without(consent(the(information(that(C(is(suffering(from(schizophrenia.(But(there(may(not(be(an(overall(breach(of(Article(8(if(that(disclosure(is(necessary(to(protect(the(public( from(the(danger(posed(by(C.(This(Article(8( formulation( is(more(naturally(understood(as(balancing(private((8(1))(rights(against(public((8(2))(rights.((It(is(similar(with(the((embryonic)(law(of(privacy.(There(one(balances(in(one(hand(the(individual's(right((embodied(in(Article(8(1))(to(have(his(privacy(respected,(with,(on(the(other(hand,(society's(interest(in(free(speech((embodied(in(Article(10(of(the(ECHR)(and(any(other(relevant(societal(interests((represented(by(8(2)).((Applying(this(to(the(celebrity(supereinjunction(cases:(an(injunction(would(be(granted(only(if(it(were(decided(that(the(public(interest(in(disclosing(the(information((an(interest(articulated(primarily(in(terms(of(Article(10)(was(outweighed(by(the(Article(8(interest(of(the( party( seeking( to( prevent( disclosure( and/or( the( public( interest( in( keeping( the(information(private.((Since(we(have( labelled(X(and(Y(celebrities( to(make( the( threat(of(publication(more(plausible,( the( analysis( would( be( identical( in( their( case.( One( can( imagine( various(circumstances( that(would(make( it(more( arguable( that( disclosure(was( in( the( public(interest.(If(X(and(Y(were(in(public(office,(for(instance,(and(the(condition(was(one(that(might(increasingly(compromise(their(judgement,(it(could(be(argued(very(forcefully(that(disclosure( was( in( the( public( interest.( That( argument( would( be( framed( both( in( the(language(of(Article(8(2)(and(Article(10.((But(the(situation(is(more(interesting(if(the(celebrity(and(danger(elements(are(missing—if(X(and(Y(are(regular,(ordinary(citizens(whose(engagement(with(the(public(will(be(in(no(way(compromised(by(their(progressive(condition.(Suppose(that(a(local(newspaper,(seeking( to( boost( flagging( sales,( nonetheless( wishes( to( disclose( X's( information,(despite(Y's(objection.(What(happens(then?(Then(we(are(in(a(situation(that(tests(to(the(limit(the(law's(tacit(acceptance(of(the(joint(account(model.(And(it(is(that(situation(that(


we(address(in(this(paper.(((Confidentiality:(the(traditional(approach((Confidentiality( is( a( central( principle( in( medical( law( and( ethics.( If( (for( instance)( a(medical( professional( undertakes( some( investigations,( the( patient( is,( prima( facie,(entitled(to(expect(the(results(to(be(kept(private.(The(default(position(is(that(they(may(be( disclosed( to( others( only( with( the( patient's( consent.( There( are( strictly( limited(circumstances(in(which(there(can(be(disclosure(without(the(patient's(consent.1((Typically,( four( primary( arguments( are( used( to( support( this( approach.2( First,( the(information(is(seen(as(belonging(to(the(patient:(it(is(about(them(and(their(body(and(so(they(have( the(strongest(claim( to( it.(Second,( the( right( to( respect( for(a(private( life( in(Article(8(of(the(ECHR(can(be(seen(to(justify(protection(of(highly(personal(information.(Third,( it( is( in( the( public( interest( to( protect( confidentiality( because( doing( so( will(encourage( people( to( seek(medical( help.3( And( fourth:( as( a( matter( of( professional(probity,( doctors( should( respect( confidences.( It( is( simply(what( decent( doctors(do.4(These(arguments,(sometimes(unsatisfactorily( jumbled(together,(have(been(seen(as(providing(a(robust(defence(of(the(doctrine(for(many(decades.(But(in(recent(years(their(adequacy(has(been(questioned.((Genetic(information(has(posed(the(most(potent(challenge(to(the(traditional(approach.(It(is(no(longer(uncontroversial(that(one(person's(genetic(information(is(‘theirs’(and(that(it( is(private( to( them.( It(can(be( information(about(a( relative,(and(hence(regarded(as(familial(information.5(A(popular(way(of(expressing(this(view(is(that(genetic(information(is(best(regarded(as(held(in(a(joint(account.(((The(joint(account(model((Lucassen(and(Parker6(suggest( that(some(genetic( information( is( ‘essentially( familial(information,(drawn( from(a(kind(of( joint(account’.(Bartha(Knoppers,( supporting( their(approach,(says( that:( “the$very$nature$of$genetic$ information,$as$both$ individual$and$universal,$now$mandates$its$treatment$as$familial”.7((Lucassen(explains:(“the$joint$account$model$argues$that$since$genetic$information$is$shared$by$more$than$one$person,$the$conventional$model$of$confidentiality$should$be$reversed:$the$genetic$information$should$be$available$to$all$‘account$holders’$(family$members)$unless$there$are$good$reasons$to$do$otherwise.8”((This(means(that(a(patient(who(asked(a(clinician(not(to(disclose(information(to(a(relative(would(be(analogous(to(a(client(who(asked(a(bank(manager(not(to(disclose(information(about(a(joint(account(to(fellow(account(holders.(The(patient/client(would(have(no(right(to(do(that.((As(an(aside,(it(is(worth(noting(that(the(language(of(‘joint(account’(used(by(Lucassen(and(Parker( is( liable( to(confuse.(The(standard(model(of(a( joint(bank(account(allows(


each(party(to(access(and(remove(funds(from(the(account(without(notice(to(the(other.(It(is(clear(that(this(is(not(the(model(Lucassen(and(Parker(have(in(mind.(They(argue(that(both(parties(should(be(able(to(see(what(funds(are(in(the(‘account’,(but(they(do(not(contend(that(one(party(can(use(the(account((for(instance,(to(make(payments)(without(reference(to(the(other.((Lucassen(and(Parker(justify(this(approach(on(the(basis(of(justice.(They(argue:(“Genetic$ information$ is,$ spontaneous$mutations$ aside,$ essentially$ and$ unavoidably$familial$ in$nature.$It$ is$this$feature$of$genetics$that$allows$individuals$to$benefit$ from$genetic$testing$and$diagnosis.$When$a$patient$attends$a$genetic$clinic,$or$discusses$genetics$ with$ his$ or$ her$ general$ practitioner,$ a$ family$ history$ will$ be$ constructed,$drawing$ on$ familial$ information$ about$ diseases$ and$ illness$ supplied$ by$ the$ patient$about$other$family$members,$often$without$their$consent.$In$many$cases$an$extensive$family$history$is$needed$to$assess$the$usefulness$of$genetic$testing.$Given$this,$there$is$no$obvious$reason$why$one$family$member$should$be$able$to$benefit$and$yet,$at$the$same$time,$be$allowed$to$exclude$others$from$access$to$such$benefits.6”((The(approach(is(also(justified(by(the(way(that(most(geneticists(work(with(families.(They(often(come(in(contact(with(several(generations(of(families(and(owe(responsibilities(to(each( of( the( members.( It( might( also( be( said( to( be( how( most( families( regard( the(information—not(as(belonging(to(one(member,(but(as(familial.(Parker(and(Lucassen(argue(further(that(there(are(public(benefits.(The(‘personal(account(model’(supporting(strict( confidentiality( means( that( the( benefits( of( genetic( testing( are( untapped.( The(relatives(risk(not(gaining(benefits(from(the(information,(and(risk(developing(conditions.(They(may(lose(trust(in(their(doctors(if(it(becomes(apparent(that(their(clinicians(knew(or(could(easily(have(known(that(they(had(a(high(risk(of(developing(a(condition,(but(did(not(inform(them.(((Contrasting( the( joint( account( model( and( the(traditional(approach((It(is(important(not(to(overemphasise(the(differences(between(the(‘joint(account’(and(traditional(model.(Where(a(genetic(condition(is(diagnosed(in(a(patient,(and(the(issue(arises(whether(or(not(a(relative(can(be(informed(of(the(diagnosis,(the(‘joint(account’(model(will(permit(access(to(the(information(because(it(is(in(part(‘their’((joint)(information((just( as( a( signatory( to( a( joint( account( is( entitled( to( access( to( the( joint( account).(However,(it(is(by(no(means(obvious(that(the(traditional(approach(would(not(lead(to(the(same(answer.( Indeed,(Parker( and( Lucassen( acknowledge( that( it(would(where( the(genetic( condition( relates( to( a( serious( illness.( True,( disclosure( will( be( justified( for(different(reasons:(under(the(joint(account(model(because(the(information(is(joint,(and(under(the(traditional(approach(because(there(is(a(sufficiently(strong(reason(to(justify(a(departure( from( the( default( position( of( nonedisclosure.( But( the( two( approaches(will(produce(significantly(different(results(in(the(rare(case(of(a(genetic(condition(that(is(not(sufficiently( serious( to( justify( disclosure( under( the( traditional( approach.( That( the(practical(difference(between(the(two(approaches(is(normally(small(is(appreciated(well(when( one( recalls( that( it( is( very( rare( for( people( not( to( be( willing( to( share( genetic(information(with(their(family(members.9((


(Weaknesses(of(the(joint(account(approach((Under(the(joint(account(approach,(a(family(member( is(permitted(access(to(the(joint(account(information,(but(unless(they(are(informed(that(there(is(something(they(should(be(looking(for(there(is(no(reason(for(them(to(seek(to(access(the(information.(For(the(kind(of(approach(that(Parker(and(Lucassen(are(seeking(to(promote,(there(needs(to(be(some(kind(of(obligation(on(a(doctor(or(patient(to(inform(the(family(members(that(there(is(information(that(they(may(wish(to(know.(Using(the(‘joint(account’(analogy,(we(need(to(impose(an(obligation(on(the(bank(manager(to(inform(the(other(account(holder(that(they(should(look(at(the(account.(Especially(because,(unlike(a(joint(account,(the(relative(will( not( regularly( be( checking( the( account( as( a( matter( of( course.( Lawyers( have(struggled(to(fit(such(an(obligation(within(the(confines(of(the(law(of(tort,(although(there(may(be(ways(around( that(difficulty.(The(difficulties(have(been(well( summarised(by(Fay.10(They( include(the(courts’( traditional(disinclination(to( impose(duties(of(rescue,(suffocatingly(tight(models(of(the(doctor–patient(relationship(and(the(difficulties(raised(by(the(doctrines(of(foreseeability,(proximity(and(reasonableness.(But(even(when(one(is(considering(the(liability(of(a(clinician(for(nonedisclosure(of(information(to(a(potentially(affected( relative(of(a(patient( (not(our(concern( in( this(paper),( there(are(ways( round(these(obstacles(that(do(not(involve(going(outside(the(traditionally(defined(borders(of(tort.(Fay(suggests(identifying(the(necessary(foreseeable(harm(as(“the(consequences(of(a(loss(of(a(chance(to(seek(medical(treatment,(and(to(restrict(the(duty(to(disclose(only(to(the(situation(where(an(effective(treatment(is(possible(and(the(claimant(is(an(identifiable(victim”((by(which(he(means(a(member(of(the(nuclear(family).10((For(present(purposes,(we(remain(agnostic(on(the(question(of(whether(or(not(this(is(the(right(analysis,(but(we(accept(that(it(is(a((if(not(the)(way(of(accommodating(joint(account(concerns(within( the(existing(confines(of( the( law(of( tort.(That(accommodation,(while(reassuring,(is(not(necessary(for(our(thesis.(We(are(concerned(here(with(the(liability(in(the(law(of(confidentiality((not(negligence)(for(disclosure(of(a(piece(of(one's(own((but(shared)(information.((We(find(an(approach(of( the(kind(proposed(by(Roy(Gilbar(and(Sivia(Barnoy(helpful.(They( rely( on( communitarian( and( feminist( approaches( to( patient( autonomy,( which(stress(that(the(patient(has(a(moral(responsibility(to(take(their(relatives’(interests(into(account(when(making(decisions(that(have(implications(for(the(relatives’(lives.9(Under(such(an(approach(there(is(a(positive(obligation(on(an(individual(to(inform(relatives(that(there(is(information(they(may(wish(to(know(about.(They(argue:(“it$ is$the$individual’s$social$embeddedness$that$nurtures$his$or$her$autonomy.$Consequently,$the$individual$has$an$interest$in$maintaining$familial$relationships$and$in$living$in$a$community$with$which$he$or$she$can$identify.$Although$this$perception$of$relational$autonomy$accepts$that$a$personal$interest$in$making$informed$and$free$decisions$is$the$major$vehicle$by$which$patients$can$lead$their$lives$as$they$wish,$it$emphasises$the$conviction$that$the$patient$develops$his$or$her$autonomy$by$engaging$with$those$around$him$or$her.$When$familial$tensions$over$genetic$information$arise,$this$alternative$approach$recognises$that$the$strict$rule$of$confidentiality$should$be$relaxed$and$provide$room$for$the$ethics$of$ the$ family,$which$ is$mainly$based$on$ care,$ commitment,$ intimacy,$ solidarity$ and$mutual$responsibility.”$They(suggest(that(the(following(factors(should(be(considered(in(deciding(how(to(deal(with(family(members(in(the(event(of(a(diagnosis(of(a(hereditary(


disease:($

o( the(availability(of(cures(or(preventive(measures(o( the(severity(of(the(disease(and(likelihood(of(onset(o( the(nature(of(the(disorder(o( the(availability(of(genetic(testing(and(its(accuracy(in(assessing(the(risk(o( the(relative’s(likely(emotional(reaction(when(given(the(information(o( the(effect(any(decision((to(disclose(or(not(to(disclose)(will(have(on(the(familial(relationship(and(on(the(dynamics(of(the(particular(family((

(But(such(a(model(does(not(resolve(all(the(ethical(issues.(There(are(questions(of(how(and(when(the(relatives(should(be(informed(of(the(news.(Complexities(may(arise(where(families(are(dysfunctional.(It(may(be(argued(that(allowing(the(relative(to(decide(when(and(how(to(inform(the(other(members(of(the(family(is(the(best(approach(as(they(will(know( their( individual( circumstances( well.( Further,( there( is( the( question( of( the(protection(of( the( right( not( to( know( information,(which( two(of( us( (CF(and(JH)(have(supported(elsewhere.11((Matthew( Liao( has( challenged( the( contention( of( Parker( and( Lucassen( that( genetic(information(should(be(regarded(as(quintessentially(familial.(He(points(out(that(some(genetic( conditions( can( occur( spontaneously.( He( gives( the( example( of( Duchenne(muscular(dystrophy,(where(one(in(three(cases(is(the(result(of(a(spontaneous(mutation.(Further,(he(contends,(the(reference(to(‘familial$information$is$too$broad’.(The(extent(to(which(a(genetic(condition(may(be(passed(depends(on(the(sex(of(the(parties(and(the(nature( of( their( blood( relationship.( Monozygotic( twins,( for( example,( clearly( share(genetic( information( in( a( much( more( intimate( way( than( grandparents( and(grandchildren.(The( ‘joint(account’(model,(without(many(caveats,(does(not(allow( for(such(differences,(instead(grouping(families(together(as(joint(account(holders.(((Thus(to(rest(the(case(for(requiring(sharing(simply(on(the(‘joint(account’(nature(of(the(information(may(be(inadequate.(We(need(to(look(more(broadly(at(the(obligations(to(share(which(flow(from(the(nexus(of(relationships(in(which(the(parties(exist.((We( suggest( that( the( best( approach( is( to( combine( the( joint( account(model( with( a(relational(approach(of(the(kind(Gilbar(and(Barnoy(suggest.9(((The(joint(model(in(a(broader(context((The(Lucassen(and(Parker(model( fits( in(with(some(broader( themes( in( the( literature,(which(we(can(only(touch(upon(here.6(,12(,13(Their(model(acknowledges(the(growing(unease(with( the(dominant( individualist( discourse,(which( focuses(on(autonomy(and(personal( rights.14( In( particular,( it( acknowledges( the( importance( of( relationality( in(medical( law(and(ethics—a(notion( that,( in(many(hands,(emphasises( responsibilities(within( relationships,( rather( than( rights.15( One( of( us( (JH)( has( written( that( in(relationships(of(care(the(traditional(model(of(confidentiality(breaks(down:(“In$the$life$of$a$caring$relationship,$information$is$commonly$shared.$The$information$about$one$body$is$information$that$is$relevant$to$another$body.$An$illness$affecting$one$person$will$affect$the$ person$ they$ are$ in$ a$ caring$ relationship$ with.$ The$ health$ of$ one$ is$ intimately$


connected$to$the$health$of$another.16”((This(is(not(the(place(to(explore(all( the(ramifications(of(these(arguments.(We(simply(note(that(the(rather(limited(point(that(Lucassen(and(Parker(make(in(relation(to(the(joint(account(model(need(not(be(seen(as(a(radical(departure(from(normal(rules,(but(rather(as( a( reflection( of( a( much( broader( shift( towards( recognising( competing(models( of(understanding(the(self,(bodies(and(illness.6(Indeed,(insofar(as(their(claims(seem(to(be(restricted(to(genetic(information,(they(may(be(seen(as(too(narrow.(Life,(not(just(DNA,(is(held(in(a(joint(account.(And(so(the(holders(of(that(joint(account(may,(depending(on(the(context,(be(holders(because(they(are(linked(by(intimate(caring(relationships(and/or(by(blood.17(((Anticipating(the(courts’(approach(to(the(joint(account(model((We(will(assume,(however,(that(the(courts(are(not(yet(prepared(to(take(on(a(completely(relational( approach( to( the( law.(That(may( require( too(big(a( rethinking(of( the( law.18(Nevertheless,(we( think( there( is(sufficient( room(within( the(current(human( rights( law(framework(for(the(courts(to(take(account,(in(considering(our(opening(scenario,(of(the(relational(approach(we(want(to(advance.(We(note(that(the(UK(General(Medical(Council((GMC),(in(its(ethical(guidance(for(clinicians,(acknowledges(that(“[g]enetic$and$some$other$information$about$your$patient$might$at$the$same$time$also$be$information$about$others$ the$ patient$ shares$ genetic$ or$ other$ links$ with”,( and( that( while( patients( will(normally(be(happy(to(disclose(relevant(information(to(relatives,(this(will(not(always(be(the(case.(When(it(is(not,(“disclosure$might$still$be$justified$in$the$public$interest….If$a$patient$refuses$consent$to$disclosure,$you$will$need$to$balance$your$duty$to$make$the$care$of$your$patient$your$first$concern$against$your$duty$to$help$protect$the$other$person$from$ serious$ harm”.19( Certainly( in( the( context( of( a( tort( claim( based( on( breach( of(confidentiality,(this(would(feature(in(argument,(and(may(carry(some(weight.(Breach(of(duty( in( clinical( negligence( claims( is( assessed( by( reference( to( the(Bolam( test:20( a(clinician(will(not(be(in(breach(of(duty(if(what(she(has(done(would(be(endorsed(by(a(responsible(body(of(opinion(in(the(relevant(specialty.(((The(GMC’s(guidance(certainly(amounts(to(a(responsible(view,(and(it(might(be(argued(that,(if(and(insofar(as(the(guidance(recognises(the(‘joint(account’(model,(that(model(has(already(been( imported( into( the( law(of( tort(on( the(back(of( the(Bolam( test.(The(difficulty(with(the(argument(is(that(the(GMC(guidance,(properly(viewed,(may(not(be(medical(guidance(at(all,(but(an(attempt(by(doctors(to(explain(what(the(law(says.(If(the(law(were( to(be(determined(by(what(doctors( thought( the( law(was,( there(would(be(a(dizzying(and(intellectually(embarrassing(circularity.(The(court(should(not(abdicate(to(the(doctors( its(responsibility( to(determine(the( law.(We(suggest( that( the(guidance( is(simply(an(acknowledgment(by(the(GMC(that(the(issue(at(the(heart(of(the(joint(account(model((namely,(intimately(shared(information)(is(medically(real,(pastorally(important(and(ethically(weighty.(It(must,(we(suggest,(be(for(the(court(to(decide(how(to(solve(the(problem.((The(court(would(need(to(balance(the(competing(claims(under(Article(8,((protecting(the(right(to(respect(for(family(and(private(life)(and(the(rights(under(Article(10((freedom(of(


expression),(bearing(in(mind(that(both(explicitly(provide(that(sufficiently(strong(reasons(can(justify(their(interference.(The(details(of(the(legal(argumentation(are(complex(and(we(will(not(go(into(them(here.((If(there(were(deadlock(between(the(competing(Article(8(and(10(rights(of(X(and(Y,(with(no(issues(of(proportionality(to(decide(the(matter(one(way(or(the(other,(what(would(the(court(do?((It(would(have(to(decide(the(case(on(the(basis(of(the(competing(public(interests.(We(have(already(acknowledged(the(public(interest(in(protecting(confidentiality.(There(can(be( and( are( likely( to( be( competing( public( interests( in( the( circumstances( of( a( joint(account( of( genetic( information.( For( example,( the( dissemination( of( the( familial(information(may(have(important(implications(for(research.(Indeed,(the(six(factors(relied(on(by(Gilbar(and(Barnoy(in(deciding(how(to(deal(with(family(members(in(the(event(of(a(diagnosis( in(X(of(a(genetic(disease(that(might(affect(Y((see(above)(are(excellent(examples(of(the(sort(of(deliberations(that(should(be(involved(in(a(judicial(weighing(of(the(two(competing(public(interests.(These(then(provide(an(excellent(set(of(criteria(for(determining(the(appropriate(balance(between(the(competing(rights.((So:(back(to(the(nonecelebrity(identical(twin(with(the(progressive(condition,(in(whom(the(local(paper(is(unaccountably(interested?(Can(an(injunction(be(issued(against(him,(on(the(application(of(his(twin,(preventing(him(from(disclosing(the(fact(of(his(own(disease(on(the(grounds(that(it(would(tell(the(world(something(secret(about(his(brother?((The(answer(is(that(we(don't(know.(Nor(is(there(anything(very(substantial(in(the(English(authorities(that(enable(prediction(of(the(result.(But,(very(tentatively,(we(suggest(that(the(answer(would(be(that(an(injunction(would(be(granted.(The(court,(we(suggest,(is(likely(to(regard(the(impact(on(Y(of(having(their(medical(condition(revealed(as(involving(a(breach(of(confidence(that(goes(deep(into(their(identity.(They(will(now(be(regarded(by(others(as(‘Y$who$has$that$condition’.(This(may(have(severe(practical(consequences,(for,( for( instance,( their(employment(or( insurance.(The( interference(with( their( right( to(respect( for(private( life(under(Article(8(will(be(profound.(Although( there( is(a(general(interest(in(free(speech(under(Article(10,(it(is(unclear(that(X(has(a(particular(interest(in(making( his( condition( public( (as( opposed( to( simply( telling( his( friends).( In( short,( in(weighing(up(the(competing(rights,(Y’s(claim(to(confidentiality(seems(stronger.((Looking(at( the(case( through(Gilbar(and(Barnoy's( lenses:( there(a(pressing(need( to(restrict(the(disclosure—a(need(arising(from(the(protection(of(Y’s(confidentiality.(There(is(no(strong(reason(why(X(wants(to(disclose(this(material.(X(is(free(to(discuss(issues(about(his(health(generally(so(long(as(doing(so(does(not(reveal(important(about(Y:(the(impact(on(his(free(speech(is(therefore(limited.((Although(we(cannot(be(sure(about(the(result,(we(can(be(fairly(sure(about(the(mood(in(the( courtroom( (initial( suspicion( of( the( joint( account( model,( followed( by( gradual(understanding(of(and(cautious(sympathy(for(the(model).((Can( the( joint(account(model( (or(Gilbar(and(Barnoy's(variant)(work?(Not(only(can( it(work,(but(it(must(and(it(does.(We(have(shown(in(this(article(how,(although(Gilbar(and(Barnoy's(analysis(comes(from(a(rejection(of(the(individualist(thinking(associated(with(human(rights,(it(can(be(used(within(human(rights(thinking.(The(jurisprudence(of(Article(


8((and,(as(in(the(extreme(circumstances(envisaged(in(this(paper,(Article(10)(mandates(application(of(the(model.(The(model(is(an(ethical(vision(of(the(interconnectedness(that(the(law(expresses(in(the(language(of(Article(8.(((Footnotes((( ( Contributors(Each(author(contributed(equally(to(this(manuscript.((( ( Competing(interests(None.((( ( Provenance(and(peer(review(Not(commissionedT(externally(peer(reviewed.((((References(1( ↵(Human(Genetics(Commission.(Inside$information:$balancing$interests$in$the$use$

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testing the limits of the ‘joint account’ model of genetic information

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