Table 2 Ethical issues in public health surveillance
From: Ethical issues in public health surveillance: a systematic qualitative review
Stage in the process | THEMES (highest abstraction level) | |
|---|---|---|
Code | Subcode (lowest abstraction level) | |
Background issues | ISSUES RELATED TO CHOICE OF FRAMEWORK FOR CONDUCTING PUBLIC HEALTH SURVEILLANCE | |
Risk of misguided judgement due to lacking ethical framework | Lacking ethical framework for using online data sources | |
Lacking ethical framework for how to treat data of the deceased | ||
Risk of misguided judgement due to using inappropriate ethical framework | Using research ethics framework (because criteria for differentiating research and surveillance are missing) | |
Employing the research vs. practice paradigm that lacks moral salience | ||
Using clinical ethics framework | ||
Using health security framework | ||
Issues related to scientific standards for evidence generation | Conflict between different knowledge systems | |
Risk of choosing framework for evidence generation that hinders production and use of relevant data | ||
RISK OF NOT FULFILLING PRECONDITONS FOR SUCCESSFUL PUBLIC HEALTH SURVEILLANCE | ||
Risk of barriers hindering development of technology to improve effectiveness and efficiency of surveillance | Lacking funding for technology development | |
Lacking necessary multidisciplinary collaboration for technology development | ||
Risk of not producing sufficiently robust evidence on effective surveillance methods | Â | |
Issues in system design and implementation | ISSUES OF DECIDING WHICH PUBLIC HEALTH SURVEILLANC SYSTEM SHOULD BE REALIZED | |
Conflicts of priority setting between different public health programs | Prioritizing between different public health surveillance systems | |
Prioritizing between surveillance activity and other public health activities | ||
Prioritizing potential emerging threats or sustained health issues | ||
Risk of wasting resources by prioritizing surveillance systems | Prioritizing disease areas important for developed nations instead of areas of high need | |
Prioritizing surveillance systems where other investments would serve public health better | ||
ISSUES OF ADEQUATELY DESIGNING A PUBLIC HEALTH SURVEILLANCE SYSTEM | ||
Conflicts of priority setting within the design of a surveillance program | Prioritizing comprehensiveness and accuracy of data or efficiency of surveillance system | |
Prioritizing efficiency by minimizing costs or security of data protection when employing digital technology | ||
Prioritizing early detection of events or efficiency trough reduction of false-positive alarms | ||
Prioritizing maximizing amount and utility of data or security of private information by limiting data collected | ||
Prioritizing harmonization of methods to improve sharing arrangements or tailoring to specific purpose | ||
Risk of making poor choices in design of the surveillance system | Not adequately considering equity issues in surveillance system | |
Not adequately tailored to the purpose and context of surveillance | ||
Not employing health information technology and other promising tools for improvement of surveillance activity | ||
Not adequately coordinating and integrating surveillance initiatives with other services – especially in developing countries | ||
Not involving communities in development and implementation of surveillance systems | ||
Commissioning actors that work ineffectively, inefficiently or unethically with running of surveillance system | ||
Setting up surveillance systems that are inherently unsustainable, unreliable or insensitive (without adequate safeguards in place) | ||
RISKS INVOLVED IN IMPLEMENTING AND RUNNING A PUBLIC HEALTH SURVEILLANCE SYSTEM | ||
Risk of inadequate legal regulation and governance structures for surveillance project | Inconsistent or overly complex legal guidance complicating effective and ethical implementation – especially for projects implemented across jurisdictions | |
No ethical review mechanism ensuring ethical obligations are followed – especially for projects involving online data sources | ||
Ethics committees making inconsistent and delayed decisions (across jurisdictions) | ||
Risk of barriers hindering successful implementation or running of surveillance system | Lacking professionals adequately trained in health information technology | |
Lack of security in areas of conflict | ||
Lacking necessary infrastructural capacity (financial, technical,governance, human resources) - especially in developing countries | ||
Lacking political, societal or institutional commitment | ||
Risk that burdens and benefits of surveillance systems are unfairly distributed | Developing countries disproportionately burdened by international surveillance effort | |
FURTHER ISSUES RELATED TO SPECIFIC KINDS OF PUBLIC HEALTH SURVEILLANCE SYSTEMS | ||
Risks of surveillance systems relying on genetic profiles | Surveillance activity focusing too much on genes and not enough on other potential risk factors | |
Surveillance focusing on genetic profiles instead of other risk factors plays part in shifting (too much) responsibility to the individual | ||
Risks of real-time surveillance systems | Surveillance system influences negatively the usability of electronic medical records system other practitioners rely on | |
Conflicts in running vaccine safety surveillance systems during pandemics | Conflict of prioritizing early detection of adverse events or other effectiveness-related goals in distribution of vaccines | |
Issues in data collection, analysis and storage | ISSUES OF PROTECTING AUTONOMY/THE RIGHT TO PRIVACY | |
Risk of people not being adequately informed about usage of their data and drop-out options – especially where data from online sources is involved | ||
Risk of intentional breaches of privacy/confidentiality | Illegitimate authorities requesting data beyond what is ethically justifiable | |
Individuals involved in data processing releasing data without authorisation – especially where community members are involved in verbal autopsy | ||
Risk of unintentional breaches of privacy/confidentiality | Unauthorised access through inappropriate storage and transfer of data – especially where digital technology is used | |
Conflicts between obtaining informed consent (reflecting the values of confidentiality/ privacy/ respect for autonomy) and realizing public health benefit – especially in name- or personal-identifier-based reporting | ||
RISK OF PRODUCING INADEQUATE INFORMATION TO GUIDE PUBLIC HEALTH ACTIVITIES | ||
Risk of collecting data that is not sufficiently accurate or complete | Collecting incorrect/fake data from user-supplied (online) data sources | |
Inadequate use of electronic collection system by professionals tainting data validity | ||
Software errors or manipulations of electronic collection system reducing data validity | ||
Collecting unrepresentative data only from parts of the population | ||
Risks of health professionals not passing on data for analysis | Health professionals mistrusting legitimacy, usefulness and privacy of surveillance system | |
Health professionals unwilling to carry administrative costs of surveillance system (without compensation) | ||
Risk of inadequate analysis and interpretation of data | Gaps in evidence about subject hinder adequate interpretation | |
Questionable reliability of methods used for data mining and meta-analysis | ||
Meticulous analysis leads to harmful delays in times of emergency | ||
RISK OF INADEQUATELY CONSIDERING (VULNERABLE) SUBGROUPS IN DATA COLLECTION | ||
Risk of needs of (vulnerable) subgroups not becoming visible by inadequate data collection strategy | Surveillance based on online data sources excludes those without internet access | |
Needs of (undocumented) migrants neglected | ||
Needs of the poorest neglected | ||
Needs of people of colour neglected | ||
Risk of stigmatizing subgroups by data collection strategies that target only those subgroups | Strategies particularly targeting migrants | |
RISKS RELATED TO SPECIFIC DATA COLLECTION STRATEGIES | ||
Risks related to using verbal autopsy for data collection | Causing emotional distress in interviewees | |
Data produced from interviews not reliable | ||
Risks related to using anonymous unlinked blood testing for surveillance | Foregoing the possibility to inform people about disease and treatment opportunities | |
Issues in data reporting, sharing and using for action | ISSUES OF ADEQUATELY PROTECTING THE RIGHT TO PRIVACY/CONFIDENTIALITY IN DATA REPORTING AND SHARING | |
Risk of intentional breaches of privacy/confidentiality | Sharing data with commercial actors for their private benefit | |
Risk of unintentional breaches of privacy/confidentiality | People publishing data are not adequately trained in data protection | |
Publicly disclosing data ensembles that allow indirect identification of individual | ||
Publicly quoting social media streams | ||
Publicly releasing data that can be linked with other sources to identify individual | ||
Conflicts between protection of privacy/confidentiality and realizing public benefit in sharing data with actors outside the surveillance system | ||
ISSUES OF INFLICTING HARM OR RESTRICTING FREEDOM WHEN LABELLING INDIVIDUALS/COMMUNITIES AS SUFFERING FROM HEALTH ISSUES | ||
Risk of inflicting physical, social or emotional harm | Individuals experiencing psychological adverse effects | |
Individuals/communities experiencing economic repercussion | ||
Individuals/communities experiencing stigmatization and discrimination | ||
Physicians rejecting difficult patients to reduce problematic situations | ||
Individuals not accessing the care they need to protect their privacy | ||
Conflicts between protection from psychosocial harm and realizing public health benefits | Protecting communities from stigmatization or benefiting them through additional resource | |
Risk of restricting freedom of choice | Individuals/communities facing coercive interventions or forms of punishment | |
Conflicts between not limiting individual freedom and realizing public health benefit | Implementing coercive interventions that benefit the targeted individual | |
Implementing coercive interventions that benefit other individuals | ||
ISSUES OF FORGOING PUBLIC HEALTH BENEFITS BY NOT ADEQUATELY PUTTING DATA TO USE | ||
Risk of not using data (in time) for public health action | Lacking necessary resources to act upon data | |
Other political interests given priority over public health goals | ||
Risk of not sharing data with other actors | National protection hinders inter-governmental sharing of data | |
Political interest in own visibility hinders sharing across institutions | ||
Insufficient resources invested in data sharing arrangement | ||
Incompatible processes for handling data hinder data sharing | ||
Risk of not adequately communicating health risks to public | Unintentionally not providing all relevant information for action | |
Deliberately communicating misleading messages for political reasons | ||
Not finding the right level of alarm to induce adequate public reaction | ||