speech 1nc vs. rnivium 4-3 6pm

8/18/2019 Speech 1NC vs. Rnivium 4-3 6PM

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T

A. Defnition—curtail domestic surveillance means the a

has to mandate a reduction in domestic surveillance

B. Violation—they only provide “transparency statements

and tell individuals tell are !ein" surveilled pro"ram !ut

dont directly mandate a curtailment o# domestic

surveillance

frst c$ is pretty damnin" on this point

%. &tandards— 'imits ( our interp is the only )ay to ensure topic

sta!ility ( other)ise as can read anythin" that mi"ht

reduce domestic surveillance instead o# actually

mandatin" a curtailment

*round + ne"ative teams !ase strate"ies on directly

curtailin" surveillance ( allo)in" anythin" that may !e

topical !lo)s up our research !urden and demolishes

clash

D. Voters

Fairness ( allo)in" untopical as ma,es it impossi!le to

!e ne"ative !ecause )e cant prep the enormous amount

o# as that are only eects topical

-ducation ( our interp encoura"es clash )hich is

necessary #or meanin"#ul topic education

&toc, ssue ( i# the a isnt topical you vote ne"ative

!ecause this de!ate should not have happened in the frst

place/ an untopical a doesnt #ulfl the the !urdens o# the

1ac and )arrants a ne"ative !allot


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A 0riori ( topicality a priori to other issues !ecause an

untopical a does not arm the resolution


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Bioterror DA3ealth surveillance solves !ioterrorism + the a "uarantees an

attac, *ostin, an internationally recognized scholar in law and public health, professor of

Law at Georgetown University; Professor of Public Health at the Johns HopkinsUniversity; and the irector of the !enter for Law " the Public#s Health at Johns

Hopkins and Georgetown Universities, $ove%ber 2441 & 'Lawrence, (Public HealthLaw )n *n *ge +f erroris%- .ethinking )ndividual .ights *nd !o%%on Goods/,

published on Health*0airs vol 12 no3 4566roetlin

The !alance !et)een individual interests and common "oods needs to !e

recali!rated in an a"e o# terrorism. 0u!lic health a"encies should have a

ro!ust in#rastructure to conduct essential pu!lic health services at a level

o# per#ormance that matches evolvin" threats to the health o# the pu!lic.

This includes a well7trained workforce, electronic infor%ation, surveillance, and

laboratory capacity3 his paper e8plains %odern e0orts at public health law refor%-a 9odel Public Health :tatute and the 9odel :tate %ergency Health Powers *ct

'9:HP*5, which has been enacted wholly or in part by nineteen states and theistrict of !olu%bia3 $e8t, the paper shows why e8isting public health laws provide

a weak foundation for public health practice3 ?? did not

generate renewed invest%ent3 hen, in the wake of the anthra8 scare, the refrain

suddenly beca%e, (6hy arent )e !etter prepared@/ he following essay by

legal scholar Lawrence Gostin suggests that our collective confusion about publichealth goes deeper than dollars3 To per#orm its essential #unctions/ the pu!lic

health system needs le"al authority to act. Aet %ost of its statutory

foundations, )hich lie primarily in the domain o# state "overnment/ havenot !een updated #or hal# a century3 ven before last fall#s terrorist attacks,

e0orts were under way to develop new %odel laws for the states3 The #ocus o# the

model le"islation is to con#er enou"h authority that pu!lic health a"encies

can mount ade5uate preparations/ o!tain in#ormation/ and act in anemer"ency to protect those )ho are threatened. But some sacrifce o#

personal ri"hts and #reedoms is necessary to achieve this end, and these

legal initiatives have been controversial3 ()n a country so tied to rights rhetoric333,any proposal that has the appearance of strengthening govern%ental authority was

bound to travel in tu%ultuous political waters,/ Gostin concludes3 hree

Perspectives that follow Gostin#s paper highlight the e8tent of the disagree%entthat still e8ists, nearly a year after the %odel law was last revised3 Gostin is ideally


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suited to clarify the diCcult issues involved3 He is a professor of law at GeorgetownUniversity; a professor of public health at the Johns Hopkins University; and director

of the !enter for Law and the Public#s Health, which drafted the 9odel :tate

%ergency Health Powers *ct at the reDuest of the !enters for isease !ontrol andPrevention3 )n defense of a %odel act that was written to bring public health law into

the %odern age3 Public and scholarly discourse in the late twentieth centurybeca%e highly oriented toward (rights3/ he political co%%unity stressed the

i%portance of individual freedo%s rather than the health, security, and well7being of the co%%unity3 he salience of individualis% could be seen on both sides of the

political spectru%3 he ideological left favored a set of personal interests, principally

autono%y, privacy, and liberty3 his %eant that individuals should be free to %akechoices, restrict the Eow of health infor%ation, and have unfettered %ove%ent,

without regard to the needs and desires of the wider co%%unity3 he ideological

right favored a set of proprietary interests, principally the freedo% to contract,conduct business, use and develop property, and pursue a profession3 his %eant

that entrepreneurs should be per%itted to engage in free enterprise without the

fetters of, for e8a%ple, occupational health and safety regulations, inspections and

products liability, zoning and nuisance abate%ents, and licenses3 )n this civil andproperty rights society, the tone has been distinctly antigovern%ent3 he :tate has

been perceived as ineCcient, bureaucratic, and burdenso%e3 !itizens have opposed

ta8ation and broad health and welfare spending as well as oppressive regulation3


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to bioterroris%3F However, even in this budget, disproportionate funding is devotedto biotechnology rather than to basic prevention and population7based services34

%urrent electronic system eective—economy/ disease

prevention and treatmentFreudenheim 12'9ilt, reporter for the $A ti%es, (621 J95

Public health departments around the country have long scrutini8ed data #rom local hospitals

#or indications that diseases li,e in9uen8a/ tu!erculosis/ AD&/ syphilis and

asthma mi"ht !e on the rise/ and to monitor the health conse5uences o#

heat )aves/ #ri"id )eather or other natural phenomena3 )n the years since >622, this

scrutiny has come to include si"ns o# possible !ioterrorism3 hen %edical records were %aintained%ainly on paper, it could take weeks to nd out that an infection was beco%ing %ore co%%on or that tainted greens had appeared on grocery shelves3

But the "ro)in" prevalence o# electronic medical record s has had an une8pected benet- By co%bing

through the data now received al%ost continuously fro% hospitals and other %edical facilities, so%e health departments arespottin" and com!atin" out!rea,s )ith unprecedented speed3 9ore than one7third of thenation#s F,=== acute care hospitals now use electronic %edical records, and the share of pri%ary care doctors using the% has doubled to K= percent in thelast two years, said r3


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records re"istry/ the 7r!an 3ealth 0lan, a network of cl inics in the :outh Bron8 and Oueens, )as

a!le to triple its caseload o# mostly youn"/ lo)+income asthma patients to

@/144 . (e are in the heart of asth%a country,/ said r3 :a%uel e Leon, a lung specialist who is Urban Health#s chief %edical oCcer3 His groupco%pared spending per patient with a 9edicaid %anaged care plan in the city that did not then have electronic %onitoring3 Using its record syste% to

keep tabs on its patients, r3 e Leon said, Urban Health was able to reduce e%ergency roo% visits and hospital ad%issions3 (For children/

)e saved a!out ? percent o# the cost o# care. For adults/ savin"s )ere in

the 2> percent ran"e,/ he said3 $ew Aork !ity health oCcials began using electronic %edical records si8 years ago3 *fter reviewingthe inco%ing %edical data, city health depart%ent oCcials recently discovered that s%oking rates are a little higher in :taten )sland than in the otherboroughs3 $ow, instead of sending trainers on routine visits to every pri%ary care doctor to help the% learn to use electronic records to i%prove care, the

visits are concentrated to help those physicians whose patients need it %ost3 (6e can identi#y and monitor trends

in hi"h+priority diseases and health pro!lems !y "eo"raphy and "roups,/ said

r3 *%anda Parsons, a deputy co%%issioner at the city#s epart%ent of Health and 9ental Hygiene3 “6e can tell )here thin"s

are improvin" or "ettin" )orse.

Bioterrorism is the only impact that threatens e$tinction

Ochs 2

(Richard Ochs, Chemical Weapons Working Group Member, 2002 “Biological Weapons

must be bolished !mmediatel",# $une %,http&'')*ree*romterror)net'other+articles'abolish)html

+f all the weapons of %ass destruction, the genetically engineered biological weapons,

many without a known cure or vaccine, are an extreme danger to the continued survival of life

on eart h3 *ny perceived %ilitary value or deterrence pales in co%parison to the great riskthese weapons pose ust sitting in vials in laboratories3 hile a Qnuclear winter,Q resulting

fro% a %assive e8change of nuclear weapons, could also kill o0 %ost of life on earth and

severely co%pro%ise the health of future generations, they are easier to control. Biological

weapons, on the other hand, can get out of control very easily, as the recent anthrax attacks

has demonstrated3 here is no way to guarantee the security of these doo%sday weaponsbecause very tiny a%ounts can be stolen or accidentally released and then grow or be

grown to horrendous proportions3 he Black eath of the 9iddle *ges would be s%all inco%parison to the potential da%age bioweapons could cause3 *bolition of che%ical

weapons is less of a priority because, while they can also kill %illions of people outright,their persistence in the environ%ent would be less than nuclear or biological agents or

%ore localized3 Hence, che%ical weapons would have a lesser e0ect on futuregenerations of innocent people and the natural environ%ent3 Like the Holocaust, once a

localized che%ical e8ter%ination is over, it is over3 ith nuclear and biological weapons,the killing will probably never end3 .adioactive ele%ents last tens of thousands of years

and will keep causing cancers virtually forever3 Potentially worse than that, bio-engineered

agents by the hundreds with no known cure could wreck even greater calamity on the humanrace than could persistent radiation. AI! and ebola viruses are "ust a small example of

recently emerging plagues with no known cure or vaccine. #an we imagine hundreds of such

plagues$ %&'A( )*+I(#+I( I! ( P!!IB)3


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&ecrecy %0

Te$t The 7nited &tates #ederal "overnment should

Publicly announce that #ongress mandate that federal collection of electronicmedical information is allowed only under the guarantee of public transparency

statements and notices detailing collection and use.

then not mandate that federal collection of electronic medical information is

allowed only under the guarantee of public transparency statements and notices

detailing collection and use.

and apply enhanced Insider +hreat Program and #ontinuous )valuation protections

to the federal collection of electronic medical information.

&olves the entirety o# the a !ecause )e lead to the

perception internals they "arner impacts on

cross apply the case evidence that tal,s a!out ho) the )hy

the perception o# privacy and transparency is "ood/ )e have

the net !eneft o# the !ioterror DA as )ell as the case turns ll

"et to later

*overnmental lies ( particularly a!out surveillance ( are

inevita!le/ "ood/ and the pu!lic #or"ives them

John Bla,e 1777 !$$ ournalist3 John Blake has been honored by the :ociety ofProfessional Journalists, the *ssociated Press, and he *%erican *cade%y of

.eligion3 He is the author of Q!hildren of the 9ove%ent3Q 'Blake, (+f course

presidents lie/, !$$3 2261K623 http-66www3cnn3co%61=262261K6politics6presidents7

lie6566

ell, guess what@ hat story about ashington and the cherry tree is a lie3 $ever happened3 *nd the notion that a

good president doesnRt lie to the *%erican people 77 thatRs an illusion as well3 Historians say many o# our

"reatest presidents )ere the !i""est liars 77 and duplicity )as part o# their

"reatness3 C-very president has not only lied at so%e ti%e, !ut needs to lie to

!e eective,Q says d Uravic, a for%er ashington lobbyist, congressional chief of sta0 and author of QLying!heating :cu%3Q Presidential lying is a hot topic because of a pro%ise %ade by President +ba%a3 hile pro%oting+ba%acare, +ba%a told *%ericans that they could keep their health insurance if they wanted to3 hat turned out to

not be true for so%e, and +ba%a has been accused of lying3 :o%e political pundits warn that +ba%aRs QlieQ will

undo his second ter%3 hey say *%ericans wonRt forgive a president who violates their trust3 )tRs a good sound7bite,

but itRs bad history3 A "reat leader must C!e a "reat pretender and dissem!ler,Q

9achiavelli said in Qhe Prince3Q *nd so should a president, so%e historians say3 Aou %ight say lyin" is the

ver!al lu!ricant that ,eeps the Oval Oce en"ine runnin" . :o%e of our most

popular presidents told the biggest whoppers, say historians, including Bena%in Ginsberg, author of


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Qhe *%erican 'ie Govern%ent by the People and other Political ? when he insisted that :pain had blown up the U:: 9aine

warship in Havana Harbor, !uba, although he had no evidence3 hat lie led to the :panish7*%erican war3 very

president has not only lied at so%e ti%e, but needs to lie to be e0ective3 d Uravic, for%er ashington lobbyist and

author of QLying !heating :cu%3Q +ne popular president "ot cau"ht tellin" a lie a!out a

#ailed military action but his popularity remains intact. QPresident wight isenhowerdenied that the United :tates was Eying U71 spy planes over the :oviet Union, until the :oviets shot down one of

the planes, capturing the pilot, and he was forced to ad%it the truth,Q !ontosta says3 :o%e presidents were so

deceitful that they even lied to their friends3


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di0erent %en that he wanted the% to be his ne8t vice president during the e%ocratic national convention in 2>KK3 hen he picked a fourth %an, Harry ru%an, for the oCce, says avid Barrett, a political science professor at

Iillanova University in Pennsylvania3 QHe did it with such skill that all three %en were co%pletely convinced that

.oosevelt was behind hi%3Q he lost art of the Duotable speech hy )e need a president )ho lies

.ooseveltRs deceitfulness hasnRt stopped historians fro% widely picking hi% as one of nationRs three greatest

presidents, along with Lincoln and ashington3 Perhaps they and ordinary *%ericans forgive presidents who liebecause thereRs so%ething in hu%an nature that believes a leader needs to be cunning3

i"id health privacy protections collapses pu!lic health (

e$pansive surveillance ,ey

*%y Fairchild 'associate professor in the epart%ent of :ocio%edical :ciencesand assistant director for scholarly and acade%ic a0airs at the !enter for theHistory and thics of Public Health at the Joseph L3 9ail%an :chool of Public Health,

!olu%bia University in $ew Aork !ity5 .onald Bayer 'professor of public health andcodirector of the !enter for the History and thics of Public Health at the Joseph L3

9ail%an :chool of Public Health, !olu%bia University in $ew Aork !ity5 and Ja%es

%ol"rove 'assistant professor in the epart%ent of :ocio%edical :ciences at the Joseph L3 9ail%an :chool of Public Health, !olu%bia University in $ew Aork !ity5

ece%ber 244J (Privacy and Public Health :urveillance- he nduring ension/http-66ournalofethics3a%a7assn3org61==6216%hst27=213ht%l

he discovery that cases of paralytic polio in 1?>> )ere caused !y a single

%anufacturer of &al, vaccine, the lin,a"e o# to$ic shoc, syndrome totampons in 1?J?/ the identifcation o# the sentinel cases of AD& on the ast

and est coasts in the early 1?@4s/ the reco"nition o# 6est =ile/ &A&/ and

avian 9u at the turn of the twenty7rst centuryV)ere all the result o#

surveillance systems/ throu"h )hich alert and troubled physicians could

communicate )ith pu!lic health ocials / thus ena!lin" emer"in" patternsto !e identifed3 )n each instance, such vi"ilance made it possi!le to initiate

measures that could limit the human toll. &urveillance serves as the eyes

o# pu!lic health. =ame+!ased reportin" o# cases has provided the

#oundation #or plannin"/ intervention/ and prevention and has !een critical

#or epidemiolo"ical research into patterns o# mor!idity and mortality #or a

)ide variety o# diseases and conditions. e"istries have !een essential #or

trac,in" individuals and their conditions over time. :urveillance has also

served to trigger the i%position of public health control %easures, such as contact

tracing, %andatory treat%ent, and Duarantine3 he threat of such intervention andlong7ter% %onitoring has provoked alar% and rendered surveillance suspect for

those concerned about the unwarranted e8ercise of state authority in the na%e of

public health3 hus the history of surveillance has been bounded by a pro%ise and aspecter3 +ver the course of the 1=th century, pu!lic health ocials reiterated

the importance o# surveillance/ ar"uin" that )ithout the name and

location o# diseased individuals they )or,ed Cin the dar,ness o#

i"noranceC and mi"ht Cas )ell hunt !irds !y shootin" into every "reen

!ushC S2T3 t )as the prospect o# )hat surveillance mi"ht oer that raised

hopesVfor the delivery of services, #or li#esavin" ,no)led"e, and for protection

http://journalofethics.ama-assn.org/2007/12/mhst1-0712.htmlhttp://journalofethics.ama-assn.org/2007/12/mhst1-0712.html


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of individuals and co%%unities3 Her%ann Biggs, a titanic gure in the history ofpublic health, who was perhaps the %ost i%portant late 2>th7 and early 1=th7

century architect and philosopher of U3:3 public health surveillance, %ade it clear

that na%es of the diseased were never collected Qin order to keep clerks or adding%achines busyQ S1T3 oward the end of the 1=th century, :urgeon General avid

:atcher would state the value of surveillance as plainly as had Biggs- Qn pu!lichealth/ )e canIt do anythin" )ithout surveillance . thatRs where public health

beginsQ ST3 hen surveillance opened the doors to vital services and knowledge, itssubects could well beco%e a%ong its %ost ardent advocates, thus underscoring a

politics that goes beyond the politics of privacy3 )n the late 2>th and early 1=th

centuries, as public health was e8tending the a%bit of surveillance, the %edicalco%%unity reacted with hostility, particularly when it ca%e to tuberculosis

surveillance and see%ingly threatened to intrude on the sanctity of the clinical

relationship, over which the physician was guardian3 9edical .ecord editor George:hrady thus co%plained of B surveillance, he co%pulsory step taken is a

%istaken, unti%ely, irrational, and unwise one3333 he real obno8iousness of this

a%end%ent to the sanitary code is its o0ensively dictatorial and deantly

co%pulsory character3 )t places the Board Sof HealthT in the rather eDuivocalposition of dictating to the profession and of creating a suspicion of an e8tra bid for

public applause SKT3 Q*lready,Q he continued, Qthe profession as a whole has

watched with ealous eye the encroach%ents of the Board upon %any of thepreviously well7recognized privileges of the %edical attendantQ SKT3 +ver ti%e,

disease reporting was e8tended to chronic, noncontagious conditions such as

cancer, birth defects, and occupational illnesses3 $ot only physicians butlaboratories were often reDuired to report cases to local health authorities3 he

surveillance of chronic diseases, of course, di0ers because these conditions do not

represent a direct threat to the health of others3 *nd, indeed, when state and localhealth depart%ents rst began tracking conditions like congenital %alfor%ations

and cancers in the rst half of the 1=th century, these initiatives typically served

epide%iological or research purposes only3 hese reporting e0orts, critically, also

beca%e linked to the assess%ent and i%prove%ent of clinical care3 u%orregistries, for e8a%ple, e%phasized patient care i%prove%ent since the 2>F=s and,

currently, data fro% the $ational !ancer )nstituteRs :. progra% ':urveillance,

pide%iology, and nd .esults Progra%5 are routinely used for Duality i%prove%entinitiatives3 )t was not until the *): epide%ic that activists challenged the long7

standing tradition of na%e7based reporting3 ven so, as *): has beco%e a %ore

treatable disease, resistance to reporting has all but vanished3 )n the 2>>=s, thepro%ulgation of national standards to safeguard the privacy of %edical records, as

dictated by H)P** 'the Health )nsurance Portability and *ccountability *ct5,

provoked intense public debate3 But there was virtually no opposition to carving out

an e8ception in the guidelines for the reporting of diseases to public healthagencies3 hile there was initial uncertainty a%ong physicians and researchers

about whether hospitals could continue to provide cancer data to state registries,

the epart%ent of Health and Hu%an :ervices %ade clear that H)P** did not serveas an obstacle to reporting3 )n the early 1=th century it was physicians who

spearheaded opposition to surveillance; since the 2>=s, patients have often been

at the forefront of challenges to reporting diseases3 Parents of children with


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disabilities, for e8a%ple, successfully changed the ter%s of birth defectssurveillance in 9innesota, reDuiring the state to allow unwilling parents to opt out of

reporting3 Patient advocates within the *%erican iabetes *ssociation forced $ew

Aork !ity health oCcials to place li%its on an initiative to track cases of diabetes3But ust as often, patients with serious illnesses have pushed for better tracking of

their conditions3 Breast cancer survivors have e%erged as the %ost ardentdefenders of universal na%e7based cancer reporting, recognizing how i%portant

surveillance and the research it %akes possible is to their own well7being3 :i%ilarly,co%%unities concerned about Qcancer clustersQ and environ%ental threats have

de%anded access to the data that only cancer registries can accu%ulate3 Patients

e8pect their privacy to be protected, of course, but also %aintain that a ri"idcommitment to privacy could ho!!le the use#ulness o# re"istries. n these

instances/ pu!lic health ocial s, co%%itted to the para%ount i%portance of

surveillance, have !een e$tremely )ary a!out disclosin" any data thatcould potentially compromise individual privacy.


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%ase


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Disease

Despite privacy concerns + su!stantial num!ers o# patients are

still en"a"in" the medical system no) ( ans)ers all their lin,srin


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0atients dont actually e$pect privacy

Appari and Mohnson 14/ ' *it, ric, uck :chool of Business, ()nfor%ationsecurity and privacy in healthcare- current state of research,/ art%outh, K, 1=2=,

http-66www3ists3dart%outh3edu6library6F=23pdf566)B

Bansal et al3 '1==5 developed a set of constructs based on utility theory and prospect theory as antecedents of

trust for%ation and privacy concern that i%pact users# personal disposition to disclose their health infor%ation toonline health websites3 )n particular, they reported that users# current health status, personality traits, culture, andprior e8perience with websites and online privacy invasions play a %aor role in users# trust in the health websiteand their degree of privacy concerns3 +n the other hand, in a %ail7based survey with adult patients in ngland,

!a%pbell et al3 '1==5 found that a!out 2@(>N o# patients are neutral to their health

in#ormation & such as age, gender, ethnicity, reason for treat%ent, %edical history, personal habits i%pacting

health, type of treat%ent obtained, side e0ects of treat%ent & being used by physicians for other purpose. Only

a!out > N o# patients/ however, e$pected to !e as,ed #or permission to use

their in#ormation !y their physicians. &imilarly/ only a!out 14N o# the

patients e$pected to !e as,ed #or permission i# their doctors used their

health in#ormation #or a )ide variety o# purposes/ includin" com!inin"

data with other patients# data to provide better infor%ation to future patients, sharin" treatment

outcomes )ith other physicians/ teaching %edical professionals and )ritin" researcharticles a!out diseases and treatments.

3ealthcare privacy is not ,ey to trust

an


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!reach W cloa,ed as Qprivacy R is not the issue . *t least it#s not %ine3 Theissue see is much lar"er R trust. *iven the importance o# "ettin" this

priority ri"ht/ its really tone dea# #or anyone any)here to demand that )e

do anythin" )ith our personal health data. r3 :eidenberg#s de%and %akessense, of course, because the interests of venture capitalists are well aligned with

%any co%%ercial interests in healthcare W %uch of which has been opti%izedaround revenue and prots W not safety and Duality3 The lac, o# trust see is

clearly evident in countless stories o# coura"eous patients/ battling openly'al%ost entirely at their own e8pense5 for access to their health data3 0rivacy

issues 'and H)P**5 are o#ten cited as the le"al reason #or prohi!itin"

access/ o# course/ !ut thats Kust an e$cuse. A!sent data security 'clearlyevident5 there is no privacy and the real reason mas5ueradin" !ehind these

#alse claims isnt privacy protection W it#s revenue protection3 his isn#t ust

hospitals3 The data !attle #or many patients encompasses medical devicemanu#acturers/ pharmaceutical companies and electronic health record

vendors too. Our collective ri"hts as patients are entirely secondary R i# at

all. Here#s one e8a%ple that appeared ust yesterday in the $ew Aork i%es W

9edical .ecords- op :ecret 'by lisabeth .osenthal53 he story outlines thecontinuing case of 9r3 rier W a patient 9s3 .osenthal wrote about previously who

was billed Z22,=== after a Whour neck surgery3 9r3 rier#s e0orts to get his health

record 'for ongoing %anage%ent of his health condition5 resulted in this su%%ary- he si87week ordeal included reDuests that needed to be %ade via regular %ail,

nu%erous phone calls, consent for%s and an esti%ate for copying fees that totaled

Z2==3 his was topped o0 by an actual visit to the hospital by 9r3 rier, who sat inan oCce until he had paper docu%ents in hand3 The pro!lem is enormous R and

lon"standin"3 he above e8a%ple is si%ply one case that highlights what little

progress we#ve %ade in the course of F years3 ) reference that ti%efra%e becausethis last :epte%ber %arked the FWyear anniversary of ave deBronkart#s battle cry

at the 9edicine 13= event in oronto3 He opened his keynote with this slide3 orking

with his physician W r3 anny :ands W he was nally able to download his health

record electronically3 he data that ca%e into view, however, was largely based onbilling records and loaded with inaccuracies 'including the fact that an 8Wray fro%

1== identied hi% as a F yearWold wo%an53 He su%%arized his e8perience with

transferring his health data into Google G++GL Y232X Health 'now defunct5 thisway- )n other words, the data that arrived in Google Health was essentially

unusable3 ave deBronkart W )%agine so%eone had been %anaging your data, and

then you looked W *pril, 1==> Hugo !a%pos is another e8a%ple3 Hugo continues towork tirelessly on getting access to the data fro% the cardiac debrillator inside his

own chest3 His 8!a%bridge talk highlights his dile%%a and his ongoing battle

with 9edtronic 9 7=3X for access to the data his own heart generates W again

to %anage his own health3 Like other device %anufacturers, 9edtronic believes theyshould own the data W and patients who actually generate the data have no legal

rights3 he )! device collects a lot of data about its own function and about the

patient#s clinical status3 )t#s a pretty co%ple8 little co%puter, but unfortunately,none of this very valuable data is %ade available to the patient who originates it3

he best we can do is get a print7out or a hardcopy of an interrogation report

'typically at 4 or 21 %onth intervals53 hese reports are designed for doctors W not


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really for patients W so a lot of patients are discouraged fro% even getting thisinfor%ation3 )t#s hard to read3/ Hugo !a%pos W 8!a%bridge 1=22 arlier this

year, ) wrote about *nna 9c!ollisterW:lipp and her battle with the data that she

needs to %anage her ype 2 diabetes3 :o ) have all of this incredible infor%ationliterally 1K6 & not ust fro% %y prescription %edical devices & but also fro% %y


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hy is surveillance i%portant@ :ince the 2>?=s the public has beco%e increasinglyconcerned about health protection against real and perceived hazards, including

H)I, bovine spongifor% encephalopathy6variant !reutzfeldt7Jakob disease, food

poisoning, possible adverse e0ects of %edicines and vaccines, etc324 People e8pectthat health surveillance will be undertaken eCciently and e0ectively3 6hen

out!rea,s o# in#ectious disease occur / local public health doctors, regionale pidemiolo"ists, or, centrally, the !o%%unicable isease :urveillance !entre,

mount rapid investi"ations to ena!le them to provide protective

measures/ identi#y ha8ards/ and reduce the ris, o# #urther in#ections and

disease . )s surveillance acceptable@ hen the rationale for surveillance is

e8plained to colleagues in pri%ary care and in hospitals, they are al%ost alwayscooperative, as are a0ected patients and healthy Qcontrols,Q so%eti%es providing

personal infor%ation over the phone3 :i%ilarly, feedback fro% parents of children

with rare but i%portant disorders indicates that they support surveillance and wouldnot welco%e changes that threaten its co%pleteness or accuracy3 $o %aor e0ort,

however, has been %ade to e8plain surveillance %echanis%s or their i%portance to

the public3 hreats to health surveillance The present arran"ements #or health

surveillance are threatened !y the proposal that either e$plicit consent

should !e sou"ht #rom patients #or use o# their personal data/ or data

must !e completely anonymised. +btaining e8plicit consent before sharing

identiable patient data &imple !ut unrealistic su""estions have !een madeto solve the comple$ pro!lems surroundin" surveillance/ consent/ and

confdentiality +ne is that consent for reporting can readily be obtained fro%

patients or parents3 Almost all reportin" and re#erral o# clinical specimensrelies on the cooperation o# !usy people such as clinicians and

micro!iolo"ists )ho are providin" patient care )ith "ro)in" )or,loads in

an increasin"ly !ureaucratic environment =X ofpaediatricians return the British Paediatric :urveillance UnitRs %onthly surveillance

card, but the data the card reDuests are purposely kept to a %ini%u% in order to

sustain good response rates32 )t is our considered opinion, and that of our

colleagues, that i# e$plicit consent #or sharin" data had to !e o!tained thecompleteness and timeliness o# reportin" )ould !e dan"erously disrupted.

O!tainin" e$plicit consent )ould !e most dicult #or sin"le consultations7

for e8a%ple for an acute infectionwhen the need for a report is often onlyappreciated so%e ti%e after collection of the speci%en or after initial diagnosis3 )t is

usually i%possible to deter%ine at the ti%e of a consultation which speci%en will

reveal a signicant pathogen3 For la!oratory reportin"/ clinicians )ould haveto as, #or consent #or sharin" o# data or specimens #or every proposed

investi"ation, or else pathologists would later be ringing up clinicians to ask the%

to trace and contact patients for consent3 $either syste% could be e8pected to work

well3 hen approached, fa%ilies al%ost always wish to cooperate,K but reportin"doctors do not readily )ant to add the tas, o# o!tainin" consent to their

other )or, commitments,K 2? as a seDuential surveillance and research

investigation undertaken by the .oyal !olleges of +phthal%ologists and Paediatricsand !hild Health on retinopathy of pre%aturity illustrates3 )n this study, 1F cases

were initially reported through conventional surveillance 'without seeking e8plicit

consent fro% parents53 Later, reporting doctors were asked to obtain consent


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because an additional research study involved seeking parental views3 )n so%ecases repeated re%inders to clinicians were needed although there were only three

parental refusals3 ventually consent was obtained for 2?? of 112 eligible cases

'?FX5, and each consent took on average %onths to obtain 'L Haines, personalco%%unication, 1==253 he percentage would have been far lower had not the

investigators been able, fro% prior knowledge of e8isting cases, to re%ind cliniciansthat consent was outstanding3 +ther specialties have had si%ilar e8periences3

)ntroduction of the reDuire%ent for consent for cancer registration resulted in a =Xdrop in notications to the long established Ha%burg cancer register, destroying its

co%parative value7it is no longer referred to in uropean publications '9 Parkin,

)nternational *gency for .esearch on !ancer, personal co%%unication, 1==253 *n*%erican study on consent found that the re5uirement #or consent led to

selective e$clusion o# some patients and hence introduced !ias.2> )n the

United Ningdo%, a belief that patient consent was needed before inclusion in ageneral practitioner diabetes register contributed to ascertain%ent of only 4=X of

eligible diabetic patients,1= %ainly because so%e doctors never got round to

obtaining consent ': Burnett, U!L London, personal co%%unication, 2>>>53 *

disturbing recent develop%ent is that, notwithstanding oCcial reassurances > 2= 21so%e $H: trusts have instructed doctors not to transfer data about patients unless

they do have consent, and this has inhibited so%e doctors who were keen to

contribute to, for e8a%ple, cancer registries3 his has already i%paired the work ofthe cancer registries, and the reporting of infectious diseases %ight be si%ilarly

a0ected3 *nony%ising data before transfer t has !een su""ested that removal

o# the identifers #rom patient data )ill o!viate the need #or consent/ !ut

in a num!er o# health surveillance studies the identifers are essential

lin,s to other sources o# health in#ormation a!out individuals that provide

validation and eliminate duplication 'table53 *n alternative suggestion is to use$H: nu%bers instead of such identiers as na%es and dates of birth, but at present

$H: nu%bers are rarely included in routine data sets, so this solution )ould also

inter#ere )ith surveillance. !onclusions 3ealth surveillance is essential to

protect pu!lic health/ and e$istin" surveillance mechanisms )or,

reasona!ly )ell. &urveillance could !e seriously threatened i# it )as

thou"ht that there )as an over+ridin" need to maintain patient

confdentiality or al)ays to have to see, e$plicit consent to sharin" o#

data . e are very concerned that restrictive interpretations o# some o# the

recent "uidance on patient consent )ould so dama"e surveillance

mechanisms that they )ould cease to protect the health o# the pu!lic/

thus resultin" in preventa!le ill health and deaths.

&ystemic data collection over a )ide ran"e o# health issues isinevita!le and re5uired #or a )ide ran"e o# issues +++ the plans

reversal is !ad +++ its a linear case turn*ostin/ an internationally recognized scholar in law and public health, professor of

Law at Georgetown University; Professor of Public Health at the Johns HopkinsUniversity; and the irector of the !enter for Law " the Public#s Health at Johns

Hopkins and Georgetown Universities, 2441 & 'Lawrence, (Health )nfor%ation-


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.econciling Personal Privacy with the Public Good of Hu%an Health/, published inHealthcare *nalysis vol >,

A health care system supported !y data on almost any relevant su!Kect/

accessi!le to a diverse and si"nifcant num!er o# users/ is an inte"ral part

o# the vision #or the health care system. 0lans #or the systematic

collection/ stora"e/ use/ and dissemination o# a hu"e volume o# uni#ormdata sets in electronic #orm are already under )ay and have an aura o#

inevita!ility3 his new health infor%ation infrastructure is the subect of reports

published by the !ongressional +Cce of echnology *ssess%ent '!ongressional

+Cce of echnology *ssess%ent, 2>>, 2>??, 2>?45, the General *ccounting +Cce

')nfor%ation 9anage%ent and echnology ivision, General *ccounting +Cce,2>>a, 2>>b, 2>>25, the $ational *cade%y of :ciences 'onaldson and Lohr,

2>>K5, the epart%ent of Health and Hu%an :ervices 'ask >; ask >F5, the Physician

Pay%ent .eview !o%%ission 'Physician Pay%ent .eview !o%%#n, *nnual .eport to

!ongress, 2>>K, 2>>, 2>>15 11 and the !enters for isease !ontrol andPrevention32 he U3:3 epart%ent of Health and Hu%an :ervices issued nal

regulations on health infor%ation privacy in 1==2 'Gostin, 1==253 !ontrary to the

assertions of so%e privacy advocates, po)er#ul reasons e$ist #or the !road

collection and use o# health data3 3i"h 5uality data are needed to helpconsumers ma,e in#ormed choices amon" health plans and providers/ to

provide more eective clinical care/ to assess the 5uality and cost

eectiveness o# health services/ to monitor #raud and a!use/ to trac, and

evaluate access to health services and patterns o# mor!idity and mortality

amon" under served populations/ and to research the determinants/

prevention/ and treatment o# disease.


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place where %ost people e8perience the $H:- their GPRs surgery3 Until now, the $H:in ngland kept the stats fro% hospital visits but not fro% those day7to7day

encounters with your local doctor3 *s 143F% leaEets pop through letterbo8es,

e8plaining the new Qcare3dataQ proect, groups such as %ed!ondential3org areurging patients to opt out in the na%e of basic privacy3 +ne survey found that up to

K=X of GPs plan to keep their own personal records out of the sche%e3 9y rst,unreEective instinct would be to stay out too & and others will surely feel the sa%e

way3 )ndeed, the appeal of that stance says %uch about the ti%es we live in, bothonline and in the physical world3[


25/25

which strongly backs care3data, put it to %e- Q# )e )ant access to the !estpossi!le dru"s/ the dru" companies need access to the !est possi!le

in#ormation .Q[ here is a principle at stake here too3 )n a subtle piece for the

:ocialist Health *ssociation, Prof ave Byrne recalls the traditional %ethod ofteaching %edical students, in which a senior doctor on a ward7round would urge

the% to look at and learn fro% real7life individuals and their treat%ent- care3data is ust a hi7tech version of that process, says Byrne, gathering together doctorsR

e8perience of treating patients3 Iiewed this way, our individual e8perience oftreat%ent & suitably anony%ised & is not our private property, even if it should

re%ain private3 hose who treated us have the right to use that e8perience to

benet others, to help the collective good3[ But anonymity is the ,ey3 $one ofthese argu%ents in favour of care3data works unless we can be sure those rules on

access hold r% and that the identity of individual patients re%ains concealed & and

not easily hacked as so%e currently fear3 *nd yet online anonymity remainsve$ed3 *ll too often it seems )e donIt have it )hen )e should, whether

through data loss or $:*7style state intrusion3 *t the sa%e ti%e, we have too %uch

anony%ity when we shouldnRt- witness the social %edia trolls and abusers, or

phoney, astroturf ca%paigners, able to stay hidden when they would surely shrivelif e8posed to the daylight and forced to reveal their true identities3[ he larger

obstacle confronting this new sche%e goes beyond the virtual real%3 )t is a change

that is infecting al%ost every aspect of our shared lives- loss of trust3 :o thegovern%ent can issue guarantees of privacy protection and our rst thought is of

%issing discs, G!HO eavesdroppers or perhaps hacked phones3 oo %any

institutions have been e8posed as having betrayed their unspoken pro%ises,whether itRs 9Ps, the security services, the police, the banks or the BB!3[

speech 1nc vs. rnivium 4-3 6pm

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