COVID-19 Tests Gone Rogue: Privacy, Efficacy, Mismanagement and Misunderstandings
Manuel Morales, Rachel Barbar, Darshan Gandhi, Sanskruti Landage, Joseph Bae, Arpita Vats, Jil Kothari, Sheshank Shankar, Rohan Sukumaran, Himi Mathur, Krutika Misra, Aishwarya Saxena, Parth Patwa, Sethuraman T. V., Maurizio Arseni, Shailesh Advani, Kasia Jakimowicz, Sunaina Anand, Priyanshi Katiyar, Ashley Mehra, Rohan Iyer, Srinidhi Murali, Aryan Mahindra, Mikhail Dmitrienko, Saurish Srivastava, Ananya Gangavarapu, Steve Penrod, Vivek Sharma, Abhishek Singh, Ramesh Raskar
MMorales et al.
RESEARCH
COVID-19 Tests Gone Rogue: Privacy, Efficacy,Mismanagement and Misunderstandings
Manuel Morales , Rachel Barbar , Darshan Gandhi , Sanskruti Landuge , Joseph Bae , ArpitaVats , Jil Kothari , Sheshank Shankar , Rohan Sukumaran , Himi Mathur , Krutika Misra , AishwaryaSaxena , Parth Patwa , Sethuraman T. V. , Maurizio Arseni , Shailesh Advani , KasiaJakimowicz , Sunaina Anand , Priyanshi Katiyar , Ashley Mehra , Rohan Iyer , Srinidhi Murali ,Aryan Mahindra , Mikhail Dmitrienko , Saurish Srivastava , Ananya Gangavarapu , Steve Penrod , VivekSharma , Abhishek Singh and Ramesh Raskar PathCheck Foundation, 02139 Cambridge, USA. MIT Media Lab, 02139 Cambridge, USA. Massachusetts Institute of Technology, 02139 Cambridge, USA. Harvard Medical School, 02115 Boston, USA. Ash Center for Democratic Governance and Innovation, Harvard Kennedy School, 02138 Cambridge, USA. Institute for Technology and Global Health, 02139 Cambridge, USA National Human Genome Research Institute, National Institutes of Health, 20892 Bethesda, USA University of California, Berkeley School of Law, 94720 Berkeley, USA Renaissance School of Medicine, Stony Brook University, 11794 Stony Brook, USA University of Montreal, H3T 1J4, 11794 Montreal, Canada * Correspondence:https://web.media.mit.edu/ ∼ raskar/ MIT Media Lab, 02139Cambridge, USAFull list of author information isavailable at the end of the article
Abstract
COVID-19 testing, the cornerstone for effective screening and identification ofCOVID-19 cases, remains paramount as an intervention tool to curb the spreadof COVID-19 both at local and national levels. However, the speed at which thepandemic struck and the response was rolled out, the widespread impact onhealthcare infrastructure, the lack of sufficient preparation within the publichealth system, and the complexity of the crisis led to utter confusion among testtakers. Invasion of privacy remains a crucial concern. The user experience of testtakers remains low. User friction affects the user behavior and discouragesparticipation in testing programs. Test efficacy has been overstated. Test resultsare poorly understood resulting in inappropriate follow-up recommendations.Herein, we review the current landscape of COVID-19 testing, identify four keychallenges, and discuss the consequences of the failure to address thesechallenges.The current infrastructure around testing and information propagation is highlyprivacy invasive and does not leverage scalable digital components. In this work,we discuss challenges complicating the existing covid-19 testing ecosystem andhighlight the need to improve the testing experience for the user and reduceprivacy invasions. Digital tools will play a critical role in resolving thesechallenges.
Keywords:
COVID-19; COVID-19 testing; testing strategies for COVID-19;pandemic preparedness; inequity in COVID-19 testing; COVID-19communication/miscommunication; COVID-19 test efficacy; COVID-19 testworkflow; COVID-19 test privacy; pandemic testing; digital solutions forCOVID-19; COVID-19 apps; apps for COVID-19 tests a r X i v : . [ c s . C Y ] F e b orales et al. Page 2 of 22
Testing plays a consequential role in curbing the spread of COVID-19. Testing canbe carried out to identify cases and isolate the infected person so that the virusdoes not spread to others. Several testing methods have been developed and de-ployed, each with its own strengths and weaknesses. Data collection and generationare innate components of testing programs, but expose users to privacy invasions ifnot managed carefully. Like all medical tests, COVID-19 tests are complicated bylimitations on the sensitivity and specificity of test methods. If not adequately com-municated, these limitations confuse test takers, healthcare providers, and publichealth officials. Wait times, supply chain problems, and varied reporting require-ments all further complicate a person’s ability to undergo testing and utilize theresult of the test. In this draft, challenges in COVID-19 testing are grouped into fourcategories: Privacy, Efficacy, Workflow, and Communication. In order to effectivelycurb the spread of COVID-19 while avoiding negative effects, it is then essential tounderstand further these notions and have inclusive discussions that would lead todesigning more responsive, resilient, and societal sensitive systems.
High profile events have been held with people at the event later testing positivefor COVID-19[1]. As was the case with this high profile event, attendees underwenttesting prior to the event and were then allowed to attend without a mask or othersocial distancing measures. Rapid antigen, antibody and RT-PCR tests vary inthe probability for a false negative result for the SARS-CoV-2 virus. Variation isimpacted by the timing of the test with different false negative rates dependingon whether the test was conducted before or after the appearance of symptoms[2].The spread of COVID-19 infections among guests following the event highlightschallenges with test efficacy.Universities and colleges bringing students back to campus this fall relied onCOVID-19 tests to contain the spread of COVID-19 as the campus community re-sumed face to face learning. Testing programs varied widely among universities,with some offering testing only to symptomatic individuals while others requiredtesting prior to or after arrival on campus. A few universities implemented surveil-lance testing on their campuses and made participation a requirement for attendingclass on campus. Results and efficacy of these programs have been as diverse as thedesign of the programs and provide good insight for communities, employers, andothers considering implementation of a testing strategy.COVID-19 testing is not a standalone strategy, but rather one component amongstseveral to help mitigate spread. Yet as several colleges and universities have shown,thoughtful, well-implemented testing programs have a significant role to play in thepandemic response.
A number of tests are commercially available for COVID-19. To date, reverse tran-scription polymerase chain reaction (RT-PCR) tests remain the “gold standard”offering the highest sensitivity and specificity. However, new antigen tests are dra-matically revamping public health policy by offering results quickly. A detailed orales et al.
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Figure 1
Comparison of key traits across three primary testing methodologies [3] analysis of the clinical landscape of the tests has been completed by Gandhi et. al.,[3]
RT-PCR : Reverse transcription-polymerase chain reaction (RT-PCR) offers thehighest sensitivity (percent of correctly classified true positives) and specificity (per-cent of correctly classified true negatives) of the currently available tests. RT-PCRidentifies viral genomic material in samples taken from the nasopharyngeal cav-ity, throat, or mouth. [4] RT-PCR processing requires specialized laboratory-basedequipment and trained technicians. Specimens must be shipped to centralized lab-oratories. While specimen processing and testing can be completed within a fewhours of arrival at the laboratory, the total turnaround time to patients is typically1-7 days. [5] [6]
Rapid Antigen Detection Tests : Rapid Antigen Detection Tests (RADT) de-tect the presence of virus-specific proteins (antigens) in specimens collected fromthe same sites as RT-PCR (nasopharyngeal, nasal, throat, etc.) using immunologi-cal assays in a point-of-care setting. RADT requires commonly available laboratoryequipment and reagents and materials are typically packaged in a single kit. Re-sults for RADT can be ready in 30 to 60 minutes. The sensitivity of these tests isgenerally lower than RT-PCR, typically 84-97% of RT-PCR results. However, thesetests are considered very specific, 90-98 [7]
Lateral Flow Assay Antigen Tests : Lateral flow assay (LFA) antigen tests areanother example of rapid point-of-care testing. These assays analyze plasma, blood,or other patient samples for viral antigens and can be performed in any clinicalsetting. LFA antigen tests do not require laboratory-based equipment and obtainresults faster than RADT. [8]
At-Home Tests : Several companies are working to develop rapid, at-home testsfor COVID-19. Such tests will expand access and reduce barriers to testing. Ques-tions about sensitivity and specificity have complicated the roll out of at-home tests.Yet, at-home tests have received support from a bipartisan group of seven gover-nors in the United States and are likely to increase in prevalence and importancein COVID-19 testing programs in the coming months. [9] [10] [11]
Antibody Tests and Community-Level Tests : Antibody tests determinewhether a patient has developed immunity to COVID-19 following a known orpresumed infection. Antibodies are generated by the body as a physiological im-mune response to SARS-CoV-2 infection, and antibody tests measure the presenceof IgM or IgG antibodies against the virus. [12] The information provided by an-tibody testing is highly variable from patient to patient and depends significantlyon when the test was acquired relative to infection with SARS-CoV-2. Antibodies orales et al.
Page 4 of 22 appear in patient samples 1 to 3 weeks following infection. Some jurisdictions useantibody testing to identify plasma donors for COVID-19 treatment. While notthe focus of this paper, antibody testing is likely to increase as vaccines becomeavailable and immunity to COVID-19 becomes more widespread. [4] [13]Waste-water testing, testing sewer water for the presence of the SARS-CoV.2virus, as well as pool testing have been used to monitor the level of infection in thecommunity rather than to identify infected individuals. These tests have significantpublic health utility, but are beyond the scope of this current draft. [14] [15] [16]
Testing technologies are rapidly evolving and so is our understanding of the conta-gion phenomenon and its timeline. Combined, these breakthroughs offer a powerfultool to mitigate the risk associated with the spread of the disease. New compre-hensive strategies can now be designed to improve our current capabilities to fightthe spread, however this is not a straightforward exercise. Challenges in deployingmitigation strategies in combination with test programs using new technologies fortesting are numerous and they represent non-negligeable bottlenecks for the rollingout of such programs. Although tackling these bottlenecks require quick and decisiveactions given the emergency situation, one needs to reflect as well at the unintendedconsequences of a strategy rollout that is not adequately addressing these challenges.In this section we review in some depth these challenges and we elaborate on theconsequences of inadequately addressing them. These challenges fall into four maincategories: Privacy, Test Efficacy, Workflow, and Communication. • Privacy : Testing programs must collect private information to enable anadequate follow up. Mishandling of this data, an inadequate collection strategyor weak anonymity preservation protocols are some of the challenges aroundprivacy. • Test Efficacy : A comprehensive quantitative understanding of the thresholdsand timelines for accuracy of tests as well as their false positives and falsenegatives rates must be integrated into a testing program roll out for it to besuccessful. • Workflow : At the back-end of a testing program lies a supply chain workflowthat requires efficient planning, scheduling and operationalization for it tohave a real impact. • Communication : How the overall objectives of a testing program withina mitigation strategy are presented is also crucial to its success. There arechallenges around how to communicate to the public facts about test efficacy,interpretation of results, private data use, collection and handling as well asdistribution of test, all within a unified and coherent message.Incomplete or inadequate responses to these challenges have identifiable conse-quences that hinder the overall aimed objectives sometimes at great cost for thesuccess of the strategy. Most crucial consequences fit into 6 main forms: Spread ofDisease, Individual Behavior, Societal Impact, Economic Impact, Security and Badactors and Technology Rollout. • Disease Spread : The main objective of a testing program is to curb thespread. Partially addressed challenges will directly impact the ability of thestrategy to mitigate the spread. orales et al.
Page 5 of 22 • Individual Behavior : A second objective of a mitigation strategy is to in-fluence individual decision-making processes in their daily lives in a way thateffectively gears collective behavior towards safety choices. Failure to addressthe above mentioned challenges will hinder the ability of the strategy to pos-itively influence individual behavior hence multiplying spread events. • Societal Impact : Today’s societies exhibit systemic inequalities that havemarginalized and disenfranchised communities and that represent by them-selves challenges towards our pursuit towards social justice. Partially ad-dressed challenges may create or exacerbate sigma and discrimination towardsalready marginalized segments of the population rendering the fabric of ourdemocracies even more fragile. • Economic Impact : The managing of the current sanitary crisis has alreadycome at great cost to our economies. Sacrifices have already been made inorder to curb the spread and safe lives and hard choices still remain aheadof us. Adequately addressing these challenges might reduce the negative im-pact on our economies as testing programs are rolled out and integrated intomitigating strategies allowing for a safe path towards economic recovery. • Security and Bad Actors : Partially addressed challenges may open thedoor to abuse or misuse of the system and processes put in place. These canrepresent back-door opportunities for ill-motivated individuals or entities tomisuse and exploit weaknesses and/or information for their own advantage orinterest. • Technology Rollout : Technology must play an important role as a vehicleto effectively operationalize a testing program and its successful integrationinto an overarching mitigation strategy.Challenges and the consequences of unaddressed challenges impact the user’s per-ception and experience of COVID-19 testing. If the dynamic interrelationship be-tween the challenges and consequences is overlooked, the testing program is com-promised.
In this section, we consider the role of privacy issues and concerns in COVID-19testing. Governments and health authorities collect massive amounts of personaldata from people undergoing COVID19 testing including protected health infor-mation. Testing, itself, generates a highly sensitive piece of data- the test’s result.During the rush to enact testing programs, compromises to personal privacy havebeen made. While in some cases measures are taken to protect private information,gaps in privacy protection remain for many test users. Left unaddressed these is-sues not only jeopardize the success of testing programs, but also creates unintendedethical and societal consequences, such as discrimination, and weaken social justicestructures.
Most test programs require the user to share more sensitive informationwhile scheduling testing and receiving results than is strictly necessary orales et al.
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Figure 2
Testing program utility is weakened as consequences of the four challenges remainunaddressed similar to how a Jenga tower is weakened by players removing blocks. When enoughconsequences remain unaddressed, the testing program is compromised to the point ofineffectiveness. In the same way, once enough blocks are removed, the tower collapses. to perform the test.
Users are asked or required to provide private informa-tion including their name, email, phone number, ethnicity, country of birth, socialsecurity number (in the U.S.), residential address and recent travel history. [17] [18]
Test programs often lack transparency about the use and storage ofthe user’s data.
Sensitive data may be retained by private testing companies,government-run public health testing programs, and employers through employer-sponsored test programs after the test is completed.
Many programs do not offer users an option to opt-out of sharing sen-sitive information and consenting practices are often inadequate.
Goodprivacy practices dictate users should provide consent for data utilization. Consentis often compromised by difficult, technical language and a lack of real choice. Inmost cases, the user must provide their sensitive information in order to access thetest.
Limited data security risks exposure of the identity of people withCOVID-19.
Data collected on paper forms often sits at test campsites. Some pro-grams convey results to users through websites that require no more than name andbirthdate to look up the works. [19]
Large data sets create targets for bad actors.
Health institutions and pro-tected health information are frequent targets for cyber attacks and hacking. Longterm storage of test user data increases the likelihood the data will fall into thehands of bad actors. [20]
Countries around the world have taken heterogeneous approaches to the privacychallenges created by the response to the COVID-19. Both the legal landscape andpractical application vary. In the United States the COVID-19 Data ProtectionAct of 2020 has been introduced in Congress. If enacted, the act would supplementHIPAA protections for user’s protected health information and restrict “covered orales et al.
Page 7 of 22 entities from collecting, processing, or transferring an individual’s personal infor-mation for contact tracing with respect to COVID-19” without affirmative consent.[21]Deployment of certain strategies has been delayed or canceled because privacyconcerns could not be mitigated. In the Canadian province of Quebec for instance, avery promising non-binary exposure notification mobile application was developedby a multidisciplinary team led by the Quebec Institute of Artificial Intelligence(MILA). The mobile solution made use of state-of-the-art machine learning algo-rithms to produce an unparalleled level of personalization in the recommendationsdisplayed to the user. In order to do this, some personal data had to be collectedon a regular basis for the model to perform and although high standards were usedto encrypt, anonymize and store such data, this remained a subject of concern. Apublic largely mediatized debate ensued and the government decided not to supportthe deployment.
Disease : People’s perception on data privacy protocols plays an important rolein the social adoption and acceptance of testing which has a direct impact onprevention of disease and mitigation of disease spread. People will be reluctant toparticipate in testing programs that are unnecessarily intrusive in terms of theirdata collection or that give the impression of being intrusive. Some individuals willnot easily have all required information/documents (insurance card, driving permit,etc.), and marginalized populations may not participate if they have to divulgeinformation due to mistrust and fear of stigma and discrimination. Populationswith high levels of data rights awareness will be similarly reluctant to participate.Regardless of the source, any hesitation to undergo testing will increase the spreadof COVID-19 by delaying identification of cases and increasing the number ofunidentified cases in the community.
Individual Behavior : Data privacy concerns limit our aggregate access to infor-mation and unintentionally facilitate risky individual behavior. In the absence of anefficient testing program, individuals are constrained to making uninformed deci-sions about social distancing and quarantine and more likely to take risks. Every-daydecisions involve somewhat conscious evaluation of the tradeoff between risk andour individual utility function. Having less access to information does not preventpeople from making decisions, they keep making those decisions, but the decisionswill be uninformed, thus not necessarily optimal.
Social Impact : Mishandling of test results and data collected on testing sites orfailure to preserve anonymity during the process alienates individuals and commu-nities and leads to an exacerbation of systemic discimination and stigma. Furtherstigmatization and even discrimination against systemically margnialized individu-als in public and work spaces amplifies exsisting inequalities.In the workplace and other public spaces, testing programs in combination withdigital technology can have a negative impact to the extent that they open the doorto abuse and misuses in direct confrontation with work law as well as basic workand employment rights. Private information leaks in the workplace cause unneces-sary distress and jeopardize income and employment. Long lasting implications of orales et al.
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Economic Impact : The economic impact has been drastic since when the worldwas hit by COVID-19, hard choices have been made and even harder sacrifices areyet to come. Economies have been hurt worldwide and there are few examples ofjurisdictions or communities in the world that have successfully curb the spread ofthe disease. There is a sense of urgency to deploy as quickly and as many mitigationactions as possible. Testing programs is one such action that unequivocally can re-duce spread rates and above all, that can serve as the cornerstone of comprehensivestrategies allowing the gradual and safe opening of our economies in a world wherevaccines are yet in the future or slowly been rolled out. It is at this moment, whenthe resilience of our economies have been put to the test for longer than anyoneimagined, that decision makers might rush to deploy mitigation programs. Properprotocols for data collection, use and handling must nonetheless be put in place toavoid unintended consequences. Decisions made for the sake of the economy mighthave the exact opposite effect. Testing programs must not represent an economicburden for heavily affected sectors such as SME’s (Travel, food and entertainmentbusinesses for instance). In the presence of a strategy that inadequately addressesthe principle proportionality when implementing measures, small players would notbe able to carry recurrent costs associated with such opening strategies that relyon routine and frequent testing. A testing program must then address privacy chal-lenges in a cost effective way as not to inflict further damage to heavily hit economysectors.
Security and Bad Actors : Testing sites and their data collection processes canbecome weak links in a security context. Personally identifiable information is nowbeing collected during testing and it often sits on web servers or in handwrittenforms at testing campsites. Due to COVID-19, phishing operations have becomemore frequent and there is a significant shift to target major businesses, governmentand critical infrastructure. Large sets of sensitive data are attractive to hackers,threatening the digital safety of the individual. Insufficiently restricted access toprivate data can lead to misuse. Physical paper forms are subject to dumpster-diving and information can be easily stolen, putting details of individuals in thehands of bad actors. Eventually, as testing results begin to be required to haveaccess to services or public spaces, forgery can also become an issue.
Technology Rollout : As technological solutions are developed to assist with therollout of testing programs, they must take into consideration privacy preservingmechanisms as well as sound security measures to protect any data collected. At-tempts to address these challenges will definitely increase the complexity of digitaltools for COVID-19 testing but are nonetheless crucial. When technology is notperceived as being privacy preserving, societies might collectively choose not to useit. One recent example being the AI-based contact tracing application developedin Quebec by MILA. Although it had built-in multiple anonymizing protocols andsafety features against bad actors, it was judged to be too high a risk. Increasingcomplexity increases cost and lengthens timelines. OS-dependency limits access totools. Data silos, created to protect privacy, limit the utility of data for public health orales et al.
Page 9 of 22 and restrict user record linkage. All of these represent particular challenges whentaking into consideration privacy concerns during the conception of a technologicalrollout.
Medical tests are never 100% accurate and thus false negatives as well as false posi-tive rates determine the efficacy of the test. Inherently, COVID-19 testing programsface efficacy shortcomings that must be taken into consideration. Below we discussmain issues related to the efficacy of the testing program landscape. The extentto which each of the following issues complicates testing programs varies by testmethod used and time of testing from the appearance of COVID-19 symptoms.However, the following issues can be frequently found in programs using currentlyavailable methods of testing.
The testing landscape is a complex one as multiple tests, each one exhibiting its ownadvantages and shortcomings, co-exist. Antigen tests are fast and cheaper to usebut are not as sensitive as the RT-PCR. While they can be used in vast numbers,concerns arise when the test will miss COVID-19 positive people who will continuethe chain of infection. This highlights the need to develop testing strategies focusedon reducing variation and improving efficacy. For instance, Slovakia recently insti-tuted a two test approach to overcome the challenge of low antigen test sensitivity.Slovakia tested 3.6 million people out of a total population of 5.5 million people us-ing a swab-based antigen test that delivers results in less than 30 minutes. Becausethe rapid test has a lower sensitivity than RT-PCR and likely misses a number ofCOVID-19 cases, Slovakia retested more than 2 million people within a week. Thecountry hopes the double testing plan will limit the number of false negative casesand decrease the spread of disease. Preliminary results appear promising, infectionrates in one community dropped from 1.47% to 0.62% over the course of a week.Double testing may be one strategy to overcome the lower sensitivity of rapid testswhile obtaining results quickly and less expensively[22].
Both false negative results and false positive results occur.
Different typesof tests[23] have different levels of sensitivity and specificity[24] complicating theinterpretation of a test result[25].
Test users receive results as a binary, yes or no, result.
Currently thetests are reported as a binary outcome while the underlying methods operate on adifferent level of thresholding[26] to predict the outcome. The cycle threshold scorefor the RT-PCR test requires a certain extent of interpretation[27] that might notbe suitable for the general public, nevertheless, giving a binary outcome can createa sense of panic or irresponsibility among a fraction of them.
Long turnaround times for test results decrease COVID-19 test utility.
Average test turnaround times for COVID-19 clinical tests were 2.7 days in Septem-ber 2020, having fallen from 4.0 days in April 2020. African Americans and Latinoshad disproportionately higher average wait times; an indication of how minoritygroups may be medically underserved[28].
The predictive value of the test changes over time.
The likelihood of afalse negative result varies based on the timing of the test relative to the person’s orales et al.
Page 10 of 22 exposure or onset of symptoms. A recent analysis by Kucirka et al suggested thelikelihood of a false negative result from an RT-PCR test on the day of exposure is100%; the likelihood of a false negative decreases to 20% by day 8 post exposure[29].
Record linkage is incomplete, limiting public health analysis.
During thecourse of the pandemic, some people will undergo testing more than once. Linkingtheir test records provides critical information about the spread of disease withina community. However, anonymization, lack of common identifiers, and data silosfrequently prevent this[30].
Slovakia recently instituted a two test approach to overcome the challenge of lowtest sensitivity. Slovakia tested 3.6 million people out of a total population of 5.5million people using a swab-based antigen test that delivers results in less than 30minutes. Because the rapid test has a lower sensitivity than RT-PCR and likelymisses a number of COVID-19 cases, Slovakia retested more than 2 million peoplewithin a week. The country hopes the double testing plan will limit the number offalse negative cases and decrease the spread of disease. Preliminary results appearpromising, infection rates in one community dropped from 1.47% to 0.62% overthe course of a week. Double testing may be one strategy to overcome the lowersensitivity of rapid tests while obtaining results quickly and less expensively.[22]
Disease : False negatives, misunderstandings about the timeframe in which testingshould be completed, and other challenges with test efficacy work together to de-crease the utility of testing. If unaddressed, these challenges result in greater spreadof disease as infected individuals go unidentified and fail to isolate.
Individual Behavior : One desired effect of a testing program is that of inducinga change in our collective behavior. Our daily decisions should ideally be influencedby the information that individuals gain through the use of testing programs. Iftest efficacy is an issue, then the mitigation strategy is not influencing individualchoices the way it should be. Challenges with test efficacy decrease the quality ofinformation individuals receive from a COVID-19 test leading to uninformed ormisinformed decisions about social distancing and quarantine. Individuals receivinga false positive result experience stress and possibly financial loss if their quarantineimpacts their employment. Confusion over the utility of tests and the accuracy ofresults creates mistrust and hinders adoption of testing programs.
Social Impact : Testing efficacy is a key element in the ethical and societal im-pacts of mitigation strategies. The Trade-off between benefits and risks is central toethical considerations when rolling out a given strategy. As we have seen, there arechallenges and unintended consequences associated with a testing program rollout.By their very nature, these uncertainties introduce risks that can potentially havenegative impacts in the fabric of our societies. In the absence of a clear perspectiveon the accuracy of results, it does not seem ethically viable to expose our society tothe associated risks. Confusion stemming from poorly addressed challenges of testefficacy decreases compliance with public health recommendations and contributesto the spread of rumors and falsehoods. Inaccurate results put some test users at orales et al.
Page 11 of 22 increased risk for social stigma. Failure to account for the challenges of test efficacydecreases the accuracy and utility of public health data and analytical tools, poten-tially resulting in poor policy choices or poor program design. These risks shouldnot be underestimated as they are linked to important ethical questions that canalso be decisive in the success of a testing strategy. If accuracy and efficacy of thetesting program cannot be guaranteed, societies may choose the longer term pursuesof social justice over short term inadequate solutions or strategies hence resultingin a miss opportunity to curb the spread. The choice of the government of Quebecnot to roll out a AI-based non-binary exposure notification strategy was also basedon a lack of overwhelming quantifiable evidence of its efficacy that would justify therisks of negative social impact of a roll out.
Economic Impact : Understanding of test accuracy, pitfalls, false positive rates,false negative rates, and result interpretation are key to the design of economyrecovery plans. Steps to alleviate the impact of test efficacy challenges, such asrepeat testing, add cost to testing programs. As mentioned before, testing programswith high costs could potentially bring more damage to the SME sector. Longturnaround times and false positives delay the reopening of businesses and thereturn to work of exposed employees. Such delays are particularly devastating toworkers without sufficient paid sick leave and low income workers.
Security and Bad Actors : As testing becomes more widespread and embeddedinto our daily lives as a requirement to integrate economic and social activities,more information will be shared and new protocols will be put in place. In thiscontext, people run a higher risk of exploitation and misuse of the information.Testing programs that do not introduce mechanisms via double testing will morelikely create situations where bad actors find opportunities to exploit informationfor instance by conducting forgery activities around testing results certificates.
Technology Rollout : Using technology solutions to assist with the deploymentof testing programs will face the challenge of integrating strategies designed to im-prove efficacy such as double testing. Challenges in test efficacy complicate analysisand use of data by public health and, if not accounted for, decrease the qualityof data analytics. Attempting to address these challenges may require greater datasharing by the user, potentially impacting privacy. Accounting for details, suchas the day of testing relative to the day of exposure, testing site conditions, andmethodology, all increase the complexity, and, therefore, cost and timeline, of thedevelopment of a digital tool. Such complexities also increase the likelihood of OSdependence which can leave out those without consistent and individual access tosmartphones.
Countries and states are persistently facing challenges related to the supply oftesting kits and management of testing capacities.
Inconsistent testing policies create confusion and inefficiencies.
Recom-mendations for when to undergo testing vary between jurisdictions [ref]. Some testprogram policies address challenges with test efficacy, such as optimal timing post orales et al.
Page 12 of 22 exposure for undergoing testing or variations in test specificity and sensitivity be-tween methods while others do not. This patchwork of policies persists in spite ofguidelines from leading organizations.
Limited testing capacity stymies test program deployment.
Shortagesin testing capacity have resulted from shortages of laboratory equipment, testingswabs, and other test supplies, shortages of trained personnel to perform the tests,limited numbers of testing sites, and data management issues. Mismatch betweentest site capacity and the number of users directed to the site further contributesto capacity issues. In May 2020, the number of tests performed daily utilized only70% of the global testing capacity.
Cost of testing, or uncertainty of the cost, reduces uptake of testing.
Lower costs increase testing uptake. In the US, the Families First CoronavirusResponse Act requires insurance to cover COVID-19 tests with no costs to the user;coverage is not mandated for the uninsured, though some states are offering freetesting to this population. Uncertainty about coverage of related services and a fearof unexpected bills remain barriers to testing. Cost concerns also hinder deploymentof new testing programs. Whereas, some schools have been able to implement largetesting programs, others are struggling to fund programs.
Individuals struggle to access testing sites.
Programs directed people totesting locations 250 miles from their homes. Others sent family members to differ-ent testing locations as a result of insufficient testing capacities and supply chaindisruptions. These difficulties compound any anxiety the user may have about test-ing.
Data management and IT problems plague some testing programs.
Testing programs generate large data sets. Officials struggle to manage test results,and link the data across jurisdictions. 16,000 positive test results went unreportedwhen the Excel sheet used to track cases grew too large to successfully transfer tothe central computer system in the UK. Such errors contribute to the mismatchbetween testing needs and testing supplies in some regions. Human errors furthercontribute to the chaos. Test results were sent to the wrong person following incor-rect entry of the person’s phone number into the reporting system.
Institutions, countries and companies are deploying various solutions to tackle sup-ply and capacity management challenges. The Vulnerable Population Dashboarddeveloped by McKinsey can help officials understand regional populations and allo-cate supplies in line with the demand by identifying geographic areas with relativelyhigher concentrations of people who may be vulnerable to COVID-19 and COVID-19 related public health measures based on their age, physical or behavioral healthconditions, access to healthcare services, and social factors.[ref] US Digital ResponseTeam’s online dashboard, created in partnership with the Pennsylvania Departmentof Health to track the availability of hospital beds and ventilators on a county-by-county basis, could serve the purpose of tracing the supplies of vaccines and testingkits. In Massachusetts, a mobile testing unit, financed by the state, is made avail-able to private and public schools upon request in order to perform rapid testing of orales et al.
Page 13 of 22 a group of students and/or teachers and staff once transmission has been detectedand identified under certain, specified conditions. Free testing will be performed onasymptomatic students or staff that might have been in close contact with a persontested positive for the virus.[ref]
The EU released guidance in an effort to unify the testing approachacross the European Union [ref ].
The document focuses on highlighting actionpoints for countries when adapting their national testing strategy for different stagesof the COVID-19 pandemic response, covering such issues as: types of tests, testingof symptomatic and asymptomatic cases, testing capacities, testing turn-around-time, testing in specific settings: schools, travelling, contact tracing and mobileapplications.
Disease : Spread of the disease is a consequence inherently linked to testing workflowand logistics challenges. The issues with access to testing and capacity managementproblems negatively affect the ability of health authorities to efficiently and effec-tively perform testing and contain pandemic. Insufficient testing and a decrease inthe uptake of testing by the population as a result of mistrust caused by logisticsissues increase the number of undetected or late detected cases in the communitycausing further spread of the pandemic.
Individual Behavior : Challenges with the logistics and workflow of testing pro-grams (inconsistent policies, limited access to testing sites, cost, etc) all combineto make it more difficult for people to access testing. When a person is unable toaccess testing, he/she is then making uninformed decisions in his/her daily livespotentially decreasing adherence to isolation guidelines despite most people’s intentto follow guidelines. Challenges with logistics also increase complexity of testingprograms and confusion for potential users leading to a decrease in trust.
Social Impact : Matching supply with a demand for testing, in particular inthe hot spots, where most vulnerable populations live, is crucial to address thealready persistent racial and ethnic inequality in health care delivery. The failureto do so, contributes to even greater social disparity. The inability to test, diagnoseand provide necessary health care to vulnerable populations, would foster negativebehaviours and adherence to test, trace and isolate, and in the medium turn willlead to negative economic impact for those populations.
Economic Impact : Inefficient supply chains, inaccurate testing, need for retest-ing, varied and over-the-top cost of test kits, and lack of coordinated reportingof supply increase the cost of testing operations. This indirectly affects economicrecovery initiatives. Inefficiently operated testing programs represent an inefficientallocation of resources. An inefficient testing program operation slows down anyattempt to deploy economic recovery measures. Delayed access to testing limits theability of individuals exposed to COVID-19 to return to work or school in placeswhere a test result is required for return thus impacting economic recovery.
Security/Bad Actors : Inefficiencies and mismanagement of test data increasethe risk for security breaches. Such issues create opportunities for bad actors toexploit. By multiplying the number of weak security points, inefficient workflows orales et al.
Page 14 of 22 represent a threat not only to individuals but also at a national level where sys-tematic attacks on a country’s COVID response can weaken that country’s path torecovery.
Tech Rollout : Inefficiency and complexity in test program logistics increase thecomplexity of technological solutions attempting to manage test programs. Costincreases along with complexity. The software could actually help to establish abetter and concrete structure to address the issues of test logistics such as theinitial registration to get tested, alerts about the new test methodologies and mostimportantly the process can be carried out smoothly but giving specific time slotsto the individuals for them to get tested, this would not only help fastrack theprocess but also ensure the safety of the patients who are visiting the test sites. Butnone of this is possible if underlying workflow logistic and workflow challenges arenot addressed beforehand and the solutions integrated into the development of thetechnology.
Success of mitigation strategies in Today’s democratic societies will depend heavilyon social adoption and acceptability of the different components that constitute it.In the absence of a real possibility to enforce a given strategy as compulsory, themain vehicle to success is to effectively influence individual choices to the point thatcollective behavior is modified and steered towards safety patterns. Communicatingnot only the objectives of a given strategy but also how it operates as well as itsblind spots is key to increasing acceptability and adoption. Communication must becomprehensive, transparent, inclusive and effective in order to create the trust thatis required at the individual level for it to translate into a significant behavior shiftat the collective level. Communication is also key for the coordination and logisticsrequired to effectively roll out a strategy at the scale required to significantly reducethe spread. For instance, communicating interpretation of test results in ways thateffectively empower individuals with enough information to make safe decisions asthey move about in their daily lives during the long months that are required tosafely open our societies again. Communication efforts must also look to unify dif-ferent channels and reduce misinformation. Information outputted through mediachannels about the COVID-19 pandemic has been at its peak for the past couple ofmonths with no sign of receding. Alongside valuable scientifically or otherwise vet-ted information, one finds non-scientific speculation, heavily politicized claims, allsorts of innocent rumors all the way to outlandish conspiracy theories. Infodemics,which can be described as an abundance of information, is very prevalent with re-spect to the COVID-19 crisis and this is a background chatter out of which a clearmessage must rise above in order to be heard and be efficient. This overabundanceof information has a non negligeable psychological impact and makes people skepti-cal as to what source to believe and who to believe. It is usually hard to distinguishthe facts from the rumors and this excess of information can be very taxing to anindividual as well. This in turn can affect an individual’s mental health, adding upto his/her stress and causing immense anxiety and pressure leading to a nonchalantattitude and behaviour at the individual level. In addition to individual perplexity,communities become vulnerable to the risk of polarizing opinions and hinder their orales et al.
Page 15 of 22 engagement towards holistic improvement efforts. The COVID-19 pandemic hasbeen exceptionally stressful at many levels representing an inedit situation bringinga heavy toll on everyone as well as consequences never seen before and that hinderfuture mitigation strategies.
Precise and reliable communication from officials to the public.
The on-going worldwide COVID-19 crisis is posing tremendous challenges for governmentofficials on many fronts as they have had to coordinate large scale responses to con-tain the immediate health threat posed by the pandemic. The many dimensions ofthese efforts makes it of uttermost importance to have a unified, reliable and precisecommunication from government officials to the public. This communication is keyin dealing with the pandemic. Additionally, the public health messaging is not justPSAs but employing other media outlets to debunk fake news and simplify scientificdevelopments for adoption of nanopharmaceutical interventions. Decisions and pol-icy must be clearly communicated in a transparent and understandable way so as tonot create mistrust hence maintaining the capability of officials to influence behav-ior. .Furthermore, health equity challenges limit uniform distribution and receptionof key messages.
Changing messaging over time (science) is difficult to communicatewell.
The very nature of the scientific process has self-correcting mechanisms that,using the tools and methods from science, improve our understanding of the worldin an evolving everchanging way. In any scientific endeavour, complete certainty isnever achieved and thus in a never-seen-before situation, where our understandingof the different layers of the problem evolves with the self-correcting mechanismsof science, we are learning and adapting on the fly and so are our policies, recom-mendations and strategies. Given the amount of uncertainty, the advancements intechnology, the immense number of people contributing towards the cause, thereare numerous discoveries and updates made available every day which. This willlikely lead to messages and recommendations being modified as our understandingimproves. What holds valid today, might be better understood in the future andnot have the same significance tomorrow. These continuously varying messages fromgovernment officials can cause disbelief or misunderstanding amongst the public andcan result in masses discrediting government policies and can cause mistrust thathinders the ability of officials to influence behaviour.
Scientific literacy is very crucial on the policymakers, government of-ficial’s end as well on the part of the masses.
Having scientifically literateteam members and/or spokespersons in the communication team is required in or-der to design a coherent message that the public can understand and rally behindthe implications of various policies and how the action plan is implemented. At thesame time, scientific literacy can assist government officials in making well-informeddecisions. Scientific literacy can help in bridging the communication gap betweenthe various entities involved in the system and the public in general and the lack ofit can be detrimental to everyone. [link]
A coherent and unified message must be voiced by all levels of govern-ment and by different officials within their agencies and various organi-zations.
In complex situations like the current sanitary crisis we have witnessed orales et al.
Page 16 of 22 mixed messages and statements regarding the severity of the covid-19 crisis andlater of recommendation and the mitigation strategy. It is essential that all thegovernment agencies and systems worldwide voice their opinions in a coordinatedeffort and as part of a comprehensive plan. Consistent communication from thegovernment officials backed by factual information can be beneficial and help thepublic understand better the magnitude of the situation better thus empoweringthem to make the right choices. [link]
Politicization of the sanitary crisis brings about supplementary difficul-ties that endanger the success of any mitigation response hence unnec-essarily putting people’s health at risk.
The primary objective of a mitigationresponse must be that of saving lives, influencing individual behavior in ways thateffectively reduce the spread and ultimately creating the conditions so that our so-cieties can safely reopen. Efforts to hijack the message and actions of a mitigationresponse for political gain not only is unethical, since it prioritizes other objectivesover human well-being, but it will also result in polarizing the public thus hinderingthe ability of the message to influence collective behavior at scales that can havea significant effect in reducing risk. More than half a year into the crisis, we knowall too well the negative impact in scenarios around the globe where, because ofpolitical motives, the risk of the pandemic is downplayed or the opinion of health-care experts is disregarded or put aside from the decision making process. Needlessto say the message must be devoid of political motives or any other that does notprioritizes reducing the spread and its negative impact on our society, economy andcommunities.
Test results are non-binary: Interpretation of results needs to be non-binary as well.
COVID-19 test results are often perceived in binary terms, eithera patient is infected or not. It needs to be taken into account that there are manymore layers of complexity to the test results than just a positive or negative result.The notion of non-binary results must be communicated effectively as to createawareness about the possibility and mening of false positives and false negatives.Indeed, in order to endow the public with the right information, thus empoweringthem to make the right decisions, it is essential that test results are understoodin terms of likelihoods rather than certainty. There is also the time dimension ofthe test and the individual timeline from the day of contagion of a given individual.Viral loads evolve in a statistically predictive pattern and so the efficiency of a giventest in detecting the presence of the virus. Depending on the particular context andtimeline of an individual transmission, there are time windows for which a giventest results are less accurate or relevant. Not all tests are equal nor constant in timein terms of accuracy, false positive or false negative. These creates a challenge whencommunicating this message as part of a mitigation strategy.
Social media is influencing the information that individuals consumegreatly.
There have been various researches carried out claiming huge percentagesof the population believed in misinformation after solely being influenced by socialmedia posts and articles. The contribution by social media toward misinformationand rumors are not regulated. Opinion pieces, written by individuals are perceivedas facts. Awareness regarding the implications of misinformation and spreading thesame is very crucial. orales et al.
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Efforts are being made worldwide to handle issues related to communi-cation in regards to the COVID-19 pandemic.
The UN set-up a COVID-19Communications Response Initiative to coordinate the efforts of the different Agen-cies, establish partnerships to debunk fake news and rumors with scientific andsolution-based information. “Fear, uncertainty, and the proliferation of fake newshave the potential to weaken the national and global response to the virus, bolsternativist narratives and provide opportunities for those who may seek to exploit thismoment to deepen social divisions,” said Melissa Fleming, Under-Secretary-Generalfor Global Communications “All this threatens to undermine the international co-operation urgently needed to deal with the impacts of this crisis.” [31] WHO createdthe Information Network for Epidemics (EPI-WIN) merging the social media andtechnical teams to monitor the information flow and react quickly to misinformationwith fact-based material. [32] It partnered with Viber, Facebook, and WhatsAppfor a multilingual messaging system to be able to directly reach out to 2 billionpeople. It offered key resources and access to events to journalists and denouncedrestrictive measures and attacks from certain governments towards the media. Itmobilized governments and civil society organizations to diffuse locally official in-formation from the WHO. In order to help people sail through this large quantityof information and help to flatten the COVID-19 infodemic curve, WHO initiateda Mythbuster program. It aims at clearing up all the most common myths and mis-conceptions around COVID-19 by listing by providing tips on how to recognize falseinformation. [33] ”This ‘infodemic’ is proliferating and potentially deadly. We can-not cede our virtual spaces to those who traffic in lies, fear, and hate.” says AntonioGutierrez, Secretary-General of the United Nations. The UN launched the ”VerifiedInitiative” to curb misinformation around COVID-19. It is calling on people world-wide to sign up and act as ”information volunteers” to distribute verified contentin their communities. The UN Department for Global Communications will send tothe volunteers a daily feed of verified and easy to share information material. Theultimate goal is to contrast misinformation or fill information voids. [34] Combat-ing rumors about COVID-19 in areas where digital resources are limited, such asrefugee camps, does not involve advanced artificial intelligence. The InternationalOrganization for Migration (IOM) is training refugees in Cox’s Bazar in Bangladeshto use bicycles and loudspeakers to deliver precise news and instructions. Messagematerial goes from scientific facts on COVID-19 to general information on mentalhealth and psychosocial assistance. The messages are kept on USB drives so thatdata can quickly be modified to different situations. The initiative also aims toreach the refugee population not covered by the UN Agency’s earlier project calledCOVID Info Line that allowed users to record questions, comments, and share con-cerns [35] [36]. Patwa et. al. 2020 [37] released a dataset of COVID-19 related fakenews on social media.
Disease : Errors in communication reduce the efficacy of COVID-19 testing pro-grams and generate mistrust. Communication failures create barriers to testing andreduce community compliance with public health directives leading to increased orales et al.
Page 18 of 22 spread of COVID19. COVID-19 is an emerging disease and there is more to under-stand about the its’ progression, transmission and severity. Timely and consistentpublic health communications encourages institutional preparedness and coordi-nated efforts for availability and accessibility of testing .
Individual behavior : Miscommunication results in sub-optimal actions. Indi-viduals bombarded with mixed messages feel frustrated and uncertain. Unsure ofwhether or not they should undergo testing or unable to quickly determine howto be tested, many will choose not to pursue testing. The risk individuals will notundertake testing when indicated is increased by fears of stigma and discrimination,either by their community or their employer. Communication errors also result inmisunderstanding of test results by the person undergoing the test. As a result,an individual with a significant risk to be infected may not properly isolate, in-creasing the likelihood they infect another member of their community. The impactof miscommunication on the mental health of individuals must also be considered.Feelings of fear or panic, stress, and frustration all negatively impact mental healthand increase the burden on those with mental illness. The stigma associated withsocial isolation is a deterrent for testing. Lack of targeted messaging according tothe age groups or vulnerability levels creates a complex pool of information, difficultto decipher and hence adversely affecting the adoption of testing, when needed.
Societal : Miscommunication spreads information inconsistent with the views ofpublic health authorities and results in a lack of compliance with critical recom-mendations and mandates. It decreases buy-in from community leaders; both officialand unofficial leaders are hesitant to endorse or promote ideas when the risk forerror is high. Confusion and miscommunication among officials can be incorporatedinto policy decisions, magnifying the impact of the communication error. The chaoscaused by miscommunication is fertile ground for the development of rumors. Acrossthe globe, we have seen the serious, fatal, impact of untrue rumors spread rapidlythrough a community or across social media platforms. Discrimination builds onthe foundation created by rumors. Such an extensive and serious concern, thatthe United Nations has issued guidance on addressing and countering COVID-19related Hate Speech as well.. Lack of focus on interracial and culturally sensitivecommuncations disporporationaltly affects health outcomes and timely care utiliza-tion. As marginalized communities are underrepresented in healthcare, there is abaseline for low levels of trust and collective fear, making communication even moredifficult.
Economic : Miscommunication about testing threatens the economic health ofa community. Employer misunderstanding of COVID-19 testing strategies, testingprotocols, or test results leads to incorrect decision making about employees’ abilityto remain at work. Employees who should be isolating may still be required toreport to work due to miscommunication about the meaning of a negative testresult risking the further spread of disease within the workplace. In other cases,an employee may be required to remain out of work due to a miscommunicationabout their risk for carrying COVID-19. For employees without access to paid leave,this may be financially devastating. The employer may also suffer if forced to closedue to insufficient staff levels. If COVID-19 testing programs are seen as unhelpful,poorly managed, or ineffective due to communication errors, employers are less orales et al.
Page 19 of 22 likely to implement these into their workplaces or be willing to release critical dataabout COVID-19 infections within their workplace to employers. Miscommunicationabout testing also impacts the community’s perception of the business, potentiallyresulting in community members avoiding the business despite the low risk of diseasetransmission at the site. In worst-case scenarios, businesses have been forced toclose. The economic value of COVID-19 testing far surpasses the cost of the test.Hence, miscommunication hindering testing creates an economic burden on thehealth system.
Security : Miscommunication creates space for bad actors. Fraud is easier to per-petrate in a climate of uncertainty and frequent falsehoods. [38] Particularly inthe context of health verification, misunderstanding of test results, the necessity oftesting, and the impact of testing encourage misuse, particularly if the health verifi-cation is tied to employment or access to desired services. Individuals are more likelyto be targeted when misconceptions about the disease are prevalent, possibly en-dangering them and their families. Miscommunication also increases skepticism andconcerns about privacy leading some individuals to decline to participate in testing.Similarly, contact tracing approaches are also prone to similar security breachesbarring willingness to participate in testing.
Tech Rollout : The uptake of technological tools for COVID-19 testing is com-plicated by information fatigue and mistrust resulting from miscommunication. In-dividuals unable to decipher which tools are secure and accurate are likely to scornall available tools. The utility of health verification tools, in particular, will be tiedto community trust in the tools. Miscommunication threatens to eliminate the im-pact such tools might have on the control of the pandemic. This takes away theindividual ownership of health status prompting susceptibility to rumours and mis-communications.
Testing programs which fail to adequately address the challenges described in thepreceding sections often exacerbate existing inequities as marginalized populationsface an increased magnitude of the consequences than individuals with greater so-cial, economic, and political status. In the United States, communities of color areexperiencing unequal incidences of COVID-19 infections and stark differences inmortality rates compared to White Americans [39]. Indigenous, Black, and LatinxAmericans were at least 2.7 times more likely to die from COVID-19 in 2020 [40].Particularly fraught for marginalized populations are data collection and privacyviolations as these groups are often at greater risk of government surveillance andabuse than their non-marginalized counterparts [41] and already primed to mistrustgovernment or health institutions due to past abuse [42]. The remaining challengesmay also disproportionately impact marginalized populations. While Black and His-panic/Latinx Americans are more likely to attempt to get tested for COVID, theyare less likely to be tested, due, in part, to test supply and workflow challenges[43], as well as persistent racial and ethnic disparities in healthcare delivery [44]and structural racism [45]. Each challenge must be addressed in a manner whichaccounts for the needs of vulnerable individuals and marginalized groups.These unequal negative effects are now very present in public discussions. Somesocieties are making the choice not to roll out strategies because they deem these orales et al.
Page 20 of 22 strategies pose too high a risk to the fabric of our democracies and to our collectivepursuit of social justice. The province of Quebec, Canada, decided not to roll out amobile application that made use of artificial intelligence and required the collectionof a modest amount of private data. The current context and the discussions aroundthe role of technology in mitigating the pandemic initiated an entire debate arounddata privacy and the role of technology in our daily lives and how regulation shouldbe enforced in order to bring back to individuals the control of their digital datafootprint into the future and beyond the current emergency. These risks should notbe underestimated as they are linked to important ethical questions that can alsobe decisive in the success of a testing strategy. In the absence of adequate protocolsthat preserve data privacy and anonymity, societies choose the longer term pursuesof social justice over short term inadequate solutions or strategies.
Test, trace, isolate, vaccinate are key strategies in taming the pandemic. Our earlierwork on ‘Apps Gone Rogue’, we considered unintended consequences of poorly de-signed exposure notification apps. In this paper, we have considered the unintendedconsequence of COVID-19 testing ecosystem due to challenges in privacy, efficacyand miscommunication. We believe the ecosystem is ripe for innovation. Given thetradeoffs between privacy, utility, efficacy and inclusivity, we realize there are noeasy solutions. However, by considering the wider design space and their impact, ourpaper presents a useful blueprint for policy makers, testing labs and app developersin the current and future pandemic.
Competing interests
The authors declare that they have no competing interests.
Acknowledgements
We are grateful to Riyanka Roy Choudhury, CodeX Fellow, Stanford University, Adam Berrey, CEO of PathCheckFoundation, Dr. Brooke Struck, Research Director at The Decision Lab, Canada, Vinay Gidwaney, Entrepreneur andAdvisor, PathCheck Foundation, and Paola Heudebert, co-founder of Blockchain for Human Rights, Alison Tinker,Saswati Soumya, Sunny Manduva, Bhavya Pandey, and Aarathi Prasad for their assistance in discussions, supportand guidance in writing of this paper.
Author details PathCheck Foundation, 02139 Cambridge, USA. MIT Media Lab, 02139 Cambridge, USA. MassachusettsInstitute of Technology, 02139 Cambridge, USA. Harvard Medical School, 02115 Boston, USA. Ash Center forDemocratic Governance and Innovation, Harvard Kennedy School, 02138 Cambridge, USA. Institute forTechnology and Global Health, 02139 Cambridge, USA. National Human Genome Research Institute, NationalInstitutes of Health, 20892 Bethesda, USA. University of California, Berkeley School of Law, 94720 Berkeley, USA. Renaissance School of Medicine, Stony Brook University, 11794 Stony Brook, USA. University of Montreal, H3T1J4 Montreal, Canada.
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