Ethics of Contact Tracing

and Technological Tools

Emily S. Gurley, PhD
Johns Hopkins Bloomberg
School of Public Health
Learning Objectives

► Define and provide examples of important terms, such as privacy, autonomy, and
public good

► Describe the balance between protecting public health and limits to privacy and
autonomy

► Provide examples of the balance between keeping information private and protecting
public health

► Identify a selection of technological tools that have been developed or used for each step
of case investigation and contact tracing

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 Contact Tracing as a Common
Public Health Tool

Copyright © 2020 Johns Hopkins University and Emily Gurley. Except where otherwise noted, this
work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 license.
Contact Tracing Protects the Health of the Public

If we can limit contact between infectious people

and others, we can limit opportunities for
SARS-CoV-2 to be transmitted

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 Contact Tracing Is Used Every Day

► Contact tracing is a public health Contact tracing by boat in West Africa

intervention that is used every
day to stop disease transmission

► Examples:
► Tuberculosis
► Syphilis
► HIV
► Ebola (contact tracing was a
key strategy to end the Ebola
outbreak in West Africa)

Photograph: US Centers for Disease Control and Prevention (CDC). 2014 Ebola Outbreak Response > Ebola Report >
Report: Tracing Contacts. Accessed May 5, 2020. 5
 Defining Privacy, Confidentiality,
and Other Terms About Ethics

Copyright © 2020 Johns Hopkins University and Emily Gurley. Except where otherwise noted, this
work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 license.
Privacy
► Privacy is the right of a
person to be free from
intrusion or publicity
concerning personal matters
► In other words, everyone
has the right to keep their
personal life personal
► Examples of private information that may be
discussed during contact tracing:
► Who lives in your house with you?
► With whom have you spent time in the past week?
► Where have you gone in the past week?
► How much time did you spend with people in your
home and outside your home?
► A contact tracer can ask about private information
only for the purposes of contact tracing
► A contact tracer can use the private information
provided only for contact tracing purposes
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Confidentiality
► Confidentiality is the right of an
individual to have personal,
identifiable medical information kept
private and not released without
his/her/their consent
► In other words, your medical information
cannot be shared with anyone else
unless you agree to it—but your
COVID-19 test results can be shared to
protect public health
► Examples of confidential information that
will be discussed during case
investigations and contact tracing:
► Other health conditions the case or
contact may have
► Results from the COVID-19 test
► A contact tracer can learn only about
medical information that is relevant to
contact tracing and can use it only for
contact tracing purposes
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Autonomy
► Autonomy is the right of a person to
make their own decisions; it is also known
as right to “self” or as “agency”
► In other words, each person can make
their own decisions, unless those
decisions can harm someone else
► Examples of autonomy in contact tracing:
► You can request that people
quarantine
► You can request that cases isolate
themselves from others
► In some circumstances, these requests
may be mandated and enforced
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Justice
► Justice means to act to treat an individual
justly or fairly (meaning everyone should
be treated the same way independent of
race, ethnicity, creed, socioeconomic
background, sexual orientation, or
gender)
► In other words, everyone must receive
the same treatment, regardless of who
they are
► Examples of justice in contact tracing:
► Contact tracers will attempt to find all
cases and contacts, regardless of
religion, race, or sexual orientation
► All communities, regardless of wealth,
should have contact tracing efforts to
reduce transmission
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Public Good

► A public good is anything that benefits or
provides for the well-being of the public
► In other words, it is something that
benefits everyone in the society
► Contact tracing programs are a public
good because …
► They can reduce the risk to the public
of being infected
► They can reduce illness and deaths
from COVID-19

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 Balancing Public Good With Privacy,
Autonomy, and Confidentiality

Copyright © 2020 Johns Hopkins University and Emily Gurley. Except where otherwise noted, this
work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 license.
Balance Between the Public Health Good and Individual Rights

► Contact tracing programs are a

public good because they reduce
the risk to the public from
COVID-19

► We must balance this good for

society with rights of privacy,
confidentiality, and autonomy

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The Three Legal “Tests” for a Public Health Intervention

► For a public health intervention to be able to limit the rights of individuals to privacy or
autonomy, it must meet three “tests” or criteria:
1. The intervention must be respectful of individuals and their rights
2. It must be a benefit to society that is balanced with the limits on individuals
3. It must benefit all members of society

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Legal Basis for Contact Tracing

► The legal authority to conduct public health interventions is included in the US

Constitution and state constitutions
► There are clauses to “protect the public welfare”
► Common law and general principles also apply

► Examples of other public health interventions to protect welfare:

► We require children to receive vaccinations to attend school and to protect the
community’s public health and safety
► If you have tuberculosis and refuse to take your medication, you can be required to do
so by the health department so you do not infect others

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Respect for Privacy and Confidentiality During Contact Tracing

► Assure cases and contacts that the information provided will be confidential and used
ONLY for the public health investigation and will not be shared with anyone else

► Assure cases and contacts that the information will be kept private—contacts identified
will be told that they have been exposed, but they will not be told who the case is

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Example: When a Case Tells You Private Information—Situation

► During an interview with a COVID-19 case, he tells you that his contacts are his wife, his
two children, and also his girlfriend, who lives in his neighborhood

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Example: When a Case Tells You Private Information—Questions

► Should you list his girlfriend as a contact?

► Should you tell his wife about his girlfriend?

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Example: When a Case Tells You Private Information—Answers

► Should you list his girlfriend as a contact?

► Yes, she has been exposed and should be notified and asked to quarantine
► Her exact relationship is not important

► Should you tell his wife about his girlfriend?

► No, this is private information, and you are not allowed to disclose this to anyone

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Example: When You Hear Private Information
About Someone You Know—Situation

► During an interview with a COVID-19 case, he tells you about the people that he had
contact with at a party, and some of those people went to high school with your younger
brother

► You are alarmed that there could be people with COVID-19 in your community

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Example: When You Hear Private Information
About Someone You Know—Question

► Should you warn your younger brother not to have contact with his friends?

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Example: When You Hear Private Information
About Someone You Know—Answer

► Should you warn your younger brother not to have contact with his friends?
► No, you cannot disclose any private information you learn during contact tracing, even
to your family members or friends

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Example: When a Contact Is an Undocumented Worker—Situation

► During an interview with an elderly COVID-19 case, she tells you that one of her close
contacts is her helper, who comes to her house three times a week to help clean and cook

► When you interview the helper, she tells you that she provides these services to two other
elderly patients each week, as well

► She also tells you that she is undocumented

► When you ask her to quarantine for the next 14 days, she says she cannot, because if she
does not work, she does not get paid

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Example: When a Contact Is an Undocumented Worker—Questions

► How might you try to convince the woman about quarantine?

► Should you call immigration or the police?

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Example: When a Contact Is an Undocumented Worker—Answers

► How might you try to convince the woman about quarantine?

► You should offer to put her in touch with organizations that might be able to help her
get food or other assistance while she stays home
► You should remind her that the people she cares for are at high risk for death if they get
infected because of exposure to her
► In some places, you may also require her to quarantine

► Should you call immigration or the police?

► No, you do not have the right to disclose this private information

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 Rationale for Using Technology
for Contact Tracing

Copyright © 2020 Johns Hopkins University and Emily Gurley. Except where otherwise noted, this
work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 license.
Reasons for Using Technology

► Public health staff time is often limited

► Timing of events is very important—we need to reach people quickly

► Technology can improve efficiency and speed of some public health functions

► Technology should meaningfully improve the process without creating major difficulties

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 Timeline of Infection: Window of Opportunity

Image source: Center for Teaching and Learning, Johns Hopkins Bloomberg School of Public Health. 3
 Examples of Technology Used for Each Step

Copyright © 2020 Johns Hopkins University and Emily Gurley. Except where otherwise noted, this
work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 license.
Steps and Timing

1. Interview the case

► Assess symptoms + ongoing symptom tracking
● Ask to isolate and provide support
o Recall and provide information about contacts

2. Notify the contacts

3. Interview the contact

► Assess symptoms + ongoing symptom tracking
● Ask to quarantine and provide support

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Electronic Case Reporting

► When patients get a test for COVID-19, their information is entered into an electronic
system

► There is usually a central database where positive test results are reported from
the lab

► System may vary by region

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Electronic Case Reporting:
Problem, Solutions, and Added Value

► Problem:
► It can take time for investigators to gather data and information on cases

► Solution:
► Reporting of positive tests to case investigators can be automated and standardized

► Added value:
► There is less time between diagnosis and a call from the public health team

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Tracking Symptoms

► Important for cases:

► May have worsening symptoms that require medical care
► Need to know when they have recovered and can end isolation

► Important for contacts:

► Need to identify signs or symptoms and need for care
► Possibly need access to testing

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Tracking Symptoms:
Problem, Solutions, and Added Value

► Problem:
► Daily calls to cases and contacts are time-consuming for everyone

► Solutions:
► There are applications where cases and contacts can enter symptoms directly into a
database
► Text messages can be sent to remind cases and contacts to report new or worsening
symptoms

► Added value:
► Less time is required by team
► Less time is required from cases and contacts

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Support for Isolation and Quarantine

► People may need help getting food or medicine to support quarantine

► People may be more likely to isolate and quarantine themselves with more frequent
reminders

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Support for Isolation and Quarantine:
Problem, Solutions, and Added Value

► Problem:
► Daily calls to cases and contacts are time-consuming for everyone

► Solution:
► Text messages could be sent to remind cases and contacts to limit contact with others
and provide information about where and how to get support services if needed

► Added value:
► Less time is required by contact tracing team
► Cases and contacts get frequent follow-up

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Identifying Contacts Quickly

► Numerous difficulties:
► Cases may not remember all their contacts
► Cases may not want to talk about their contacts with the interviewer because of
privacy concerns
► Cases may not know the phone numbers or addresses of their contacts
► Phone numbers for contacts may be incorrect

► It takes time to identify and get in touch with contacts

► There are a few possible supportive technologies

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Centralized Database of Phone Numbers and Locations

► Centralized databases of phone numbers and locations have been used in China and
South Korea

► All phone numbers and location data are maintained on central server
► Unique identification numbers are used for phones and medical records

► Health authorities can quickly link positive test results with your recent contacts and
locations by using GPS points

► Then, text messages can be sent to people who have been in contact with a confirmed
case

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Centralized Database of Phone Numbers and Locations:
Added Value and Concerns

► Added value:
► All contact identification and contact tracing are done immediately
► Public health teams have easy access to all relevant information

► Added concerns:
► In many countries, people would not agree to having their movements tracked by the
government in a centralized database
► GPS location is a poor way to identify contacts

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Phone-to-Phone Notification of Contact

► Applications are being developed

► Smartphone users can download an application that will communicate with other phones
that have the app

► The app uses Bluetooth technology to communicate that you have been in “contact”
(within 6 feet for 15 or more minutes, for example)

► If you are diagnosed with COVID-19, you can enter this information in the app, and the
app will notify all your contacts automatically

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Phone-to-Phone Notification of Contact:
Added Value and Concerns

► Added value:
► Contacts are notified of their exposure immediately and are advised to quarantine
► Identities of the case and their contacts are kept confidential

► Added concerns:
► It is unclear how the data could be used by public health teams
► Effectiveness depends on the number of people using the app
► Not all contacts may have been truly exposed

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 Timeline of Contact Notification Through the App:
At Home

Image source: Johns Hopkins University. 14

 Timeline of Contact Notification Through the App:
On the Train

Image source: Johns Hopkins University. 15

 Timeline of Contact Notification Through the App:
At Work

Image source: Johns Hopkins University. 16

 Timeline of Contact Notification Through the App:
Home Again

Image source: Johns Hopkins University. 17

 Timeline of Contact Notification Through the App:
A Symptom Develops

Image source: Johns Hopkins University. 18

 Timeline of Contact Notification Through the App:
Contacts Notified

Image source: Johns Hopkins University. 19

Important Considerations

► Effective public health interventions depend on public trust

► Many communities may have limited access to technological tools, such as:
► Smartphones
► Internet at home

► Just knowing about being near someone who is positive for COVID-19 and the need to
quarantine may not be enough to persuade people to act

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 Summary

Copyright © 2020 Johns Hopkins University and Emily Gurley. Except where otherwise noted, this
work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 license.
Summary of Ethical Considerations and Technology

► Contact tracing is a public good and has been used to reduce risk to the public for a
century

► Contact tracing must strike a balance between individual rights and the public good

► Contact tracers need to be sensitive to this balance and be attentive to the issues of
privacy and confidentiality when interviewing cases and contacts

► Technology tools can assist with making case investigation and contact tracing easier but
must be supported by more traditional contact tracing efforts