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P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
Do You Know Your
Privacy Risks?
Merri	Beth	Lavagnino,	Chief	Risk	Officer
Indiana	University
mbl@iu.edu
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E Privacy definition
“Privacy	is	the	claim	of	individuals,	groups	
or	institutions	to	determine	for	
themselves	when,	how,	and	to	what	
extent	information	about	them	is	
communicated	to	others.”
– Alan	Westin:	Privacy	&	Freedom,1967
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E But, it’s a moving target…
“Each	individual	is	continually	engaged	in	
a	personal	adjustment	process	in	
which	he	balances	the	desire	for	
privacy	with	the	desire	for	disclosure	
and	communication.”
– Alan	Westin:	Privacy	&	Freedom,1967
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
Here’s how you do a privacy
assessment of a service, project,
initiative, app, etc.!
• Identify	the	potential	Privacy	Harms
• Determine	what	your	institution’s	
position	will	be
– Use	the	Privacy	Principles	to	devise	
ways	to	reduce	the	harms
– You	must	do	the	minimum	required	by	
law,	but,	you	also	can	choose	to	do	more	
than	is	required	by	law
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
First, identify the Privacy Harms
• Brainstorm	the	possible	harms	so	you	
can	try	to	ANTICIPATE	(and	then	plan	to	reduce	
or	even	avoid)		these	harms
• Many	theorists	in	this	area
– William	Prosser	in	1960
– Alan	Westin	in	1967
– Daniel	J.	Solove’s 2008	“Taxonomy	of	
Privacy”
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
What	the	person	might	think: “They are	collecting	
information	about	what	I am	doing	- more	than	they	
should!”	Examples	include:
§ Surveillance — watching,	listening	to,	or	recording	an	
individual’s	activities
§ Interrogation —inappropriately	probing	for	information
§ Visual — viewing	private	activities	without	the	individual’s	
knowledge
§ Communications —tapping	your	phone,	email,	Internet	traffic
§ Too	Much	Information	(TMI)— asking	for	“private"	information	
unnecessarily
The	Information	Collection	
Harm
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
What	the	person	might	think: “They have	a	lot	of	data	
about	me,	and	they	are	storing,	manipulating,	and	
using	it!” Examples	include:
§ Aggregation	— combining	pieces	of	information	about	an	
individual	that	were	collected	from	different	sources
§ Identification	—linking	unidentified	information	elements	to	
particular	individuals
§ Insecurity	— failure	to	protect	information	from	leaks	and	
unauthorized	access
§ Secondary	use	— use	of	collected	information	for	a	purpose	
different	from	the	use	for	which	it	was	collected,	without	the	
individual’s	consent
§ Exclusion	—using	data	to	exclude	an	individual,	especially	if	
the	data	was	incorrect	or	interpreted	incorrectly
The	Information	Processing	
Harm
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
What	the	person	might	think: “They spread	or	transfer	
information	about	me — more	than	I	think	they	should!”	
Examples	include:
§ Breach	of	confidentiality	— breaking	an	agreement	to	keep	
information	confidential
§ Disclosure	— disclosing	data	to	persons	or	entities	the	individual	
doesn’t	expect
§ Exposure	— revealing	intimate	information,	as	in	a	public	
exposure	of	private	facts
§ Increased	accessibility	— amplifying	the	accessibility	of	info
§ Blackmail	— a	threat	to	disclose	personal	information
§ Appropriation	— the	use	of	an	individual’s	identity,	such	as	using	a	
name	or	picture,	without	the	individual’s	permission
§ Distortion	— disseminating	false	or	misleading	information	about	
individuals
The	Information	Dissemination	
Harm
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
What	the	person	might	think: “They come	into	my
space	and	contact	me,	or	tell	me	what	to	do!”	Examples	
include:
§ Invasions	into	private	affairs
§ Invasive	acts	that	disturb	an	individual’s	tranquility	or	solitude
§ Decisional	interference	— entering	into	an	individual’s	decisions	
regarding	her	private	affairs
§ Unwanted	email — did	you	know	that	unwanted	
communications	into	an	individual’s	personal	space,	including	
her	email	inbox,	is	considered	a	privacy	invasion?
§ Unwanted	phone	calls	—entering	into	an	individual’s	personal	
space	by	calling	his	personal	phone	number	(especially	if	it	is	a	
mobile	phone)
§ Entering	a	room	without	knocking
The	Invasion	Harm
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
Once you’ve identified the possible
HARMS...
• Then	use	the	Privacy	PRINCIPLES	to	
design	controls/safeguards	that	
appropriately	address	those	harms
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
Sources of privacy principles
• American	Institute	of	Certified	Public	Accountants,	Inc.	
(AICPA)	and	Canadian	Institute	of	Chartered	
Accountants	(CICA).	Generally	Accepted	Privacy	
Principles.	August,	2009.
• U.S.	Federal	Trade	Commission	(FTC).	Fair	Information	
Practice	Principles.	1998.
• Organisationfor	Economic	Co-operation	and	
Development	(OECD).	OECD	Guidelines	on	the	
Protection	of	Privacy	and	TransborderFlows	of	
Personal	Data.	1980,	revised	2013.
• U.S.	Department	of	Homeland	Security	(DHS).	DHS	
Fair	Information	Practice	Principles.	2008.
• U.S.	White	House.	Consumer	Data	Privacy	in	a	
Networked	World	(a.k.a.	Consumer	Privacy	Bill	of	
Rights). 2012.
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
Different terminology…but same
general concepts
DHS
• Transparency
• Individual	Participation
• Purpose	Specification
• Data	Minimization
• Use	Limitation
• Data	Quality	and	
Integrity
• Security
• Accountability	and	
Auditing
GAPP
• Management
• Notice
• Choice	and	Consent
• Collection
• Use	and	Retention
• Access
• Disclosure	to	Third	
Parties
• Security	for	Privacy
• Quality
• Monitoring	and	
Enforcement
Indiana	University	Privacy	Principles:	https://protect.iu.edu/online-safety/program/principles.html
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
§ Usually,	the	easiest	way	to	address	privacy	harms	is	
by	identifying	a	way	to	inform,	or	provide	“notice”	
to	users	of	institutional	practices	around	the	data	
collected	from	them.	
§ Posting	a	privacy	policy	on	your	website,	or	
explaining	on	a	form	or	login	screen	the	plans	for	
the	data	that	users	will	enter,	is	a	way	to	provide	
notice.		
The	Notice	Principle
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
• Address	privacy	harms	by	identifying	a	way	to	obtain	
implicit	or	explicit	consent	from	individuals	with	
respect	to	the	collection,	use,	disclosure,	and	
retention	of	their	information.
• Choice	may	apply	to	"secondary	uses"—that	is,	uses	
beyond	the	original	reasons	for	which	the	data	was	
provided.	
• Choice	may	be	"opt	in"	(data	will	not	be	shared	
without	consent),	or	"opt	out"	(user	must	request	to	
stop	the	sharing	or	contacting).	
• Consider	providing	checkboxes	to	indicate	consent	to	
various	uses.
The	Choice	&	Consent	
Principle
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
• Privacy	harms	can	be	addressed	by	reviewing	what	
data	is	being	collected	and	ensure	that	you	are	
collecting	only	the	information	needed	to	achieve	
the	purposes	identified,	in	support	of	the	
organization’s	mission,	and	as	outlined	in	the	notice.
• Especially	critical	are	very	sensitive	or	risky	pieces	of	
data	such	as	Social	Security	numbers,	credit	card	
numbers,	bank	account	numbers,	and	health	
information.
– Do	you	still	have	a	significant	business	purpose	for	it?
– If	not,	STOP	COLLECTING	it!
– If	so,	make	sure	you	PROTECT	it!	
The	Collection	Limitation	
Principle
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
• Address	privacy	harms	by	reviewing	what	
information	you	are	disclosing	to	whom.	What	third	
parties	do	you	share	the	information	with?
• Ensure	that	you	are	disclosing	information	to	others	
only	as	outlined	in	the	notice	and	only	as	consented	
to—either	implicitly	or	explicitly.
• Review	contracts	with	third	parties	regularly,	to	
ensure	up-to-date	and	appropriate	data	
protection	language!
The	Disclosure	Limitation	
Principle
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
Conclusion and
Questions
P UB LI C SA FE TY
and
I NSTIT UT IO NAL
A S S U R A N C E
Copyright	Merri	Beth	Lavagnino,	2016.	This	
work	is	the	intellectual	property	of	the	author.	
Permission	is	granted	for	this	material	to	be	
shared	for	non-commercial,	educational	
purposes,	 provided	that	this	copyright	
statement	appears	on	the	reproduced	
materials	and	notice	is	given	that	the	copying	
is	by	permission	of	the	author.	To	disseminate	
otherwise	or	to	republish	requires	written	
permission	 from	the	author.

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Lavignino Do You Know Your Privacy Risks

  • 1. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Do You Know Your Privacy Risks? Merri Beth Lavagnino, Chief Risk Officer Indiana University mbl@iu.edu
  • 2. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Privacy definition “Privacy is the claim of individuals, groups or institutions to determine for themselves when, how, and to what extent information about them is communicated to others.” – Alan Westin: Privacy & Freedom,1967
  • 3. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E But, it’s a moving target… “Each individual is continually engaged in a personal adjustment process in which he balances the desire for privacy with the desire for disclosure and communication.” – Alan Westin: Privacy & Freedom,1967
  • 4. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Here’s how you do a privacy assessment of a service, project, initiative, app, etc.! • Identify the potential Privacy Harms • Determine what your institution’s position will be – Use the Privacy Principles to devise ways to reduce the harms – You must do the minimum required by law, but, you also can choose to do more than is required by law
  • 5. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E First, identify the Privacy Harms • Brainstorm the possible harms so you can try to ANTICIPATE (and then plan to reduce or even avoid) these harms • Many theorists in this area – William Prosser in 1960 – Alan Westin in 1967 – Daniel J. Solove’s 2008 “Taxonomy of Privacy”
  • 6. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E What the person might think: “They are collecting information about what I am doing - more than they should!” Examples include: § Surveillance — watching, listening to, or recording an individual’s activities § Interrogation —inappropriately probing for information § Visual — viewing private activities without the individual’s knowledge § Communications —tapping your phone, email, Internet traffic § Too Much Information (TMI)— asking for “private" information unnecessarily The Information Collection Harm
  • 7. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E What the person might think: “They have a lot of data about me, and they are storing, manipulating, and using it!” Examples include: § Aggregation — combining pieces of information about an individual that were collected from different sources § Identification —linking unidentified information elements to particular individuals § Insecurity — failure to protect information from leaks and unauthorized access § Secondary use — use of collected information for a purpose different from the use for which it was collected, without the individual’s consent § Exclusion —using data to exclude an individual, especially if the data was incorrect or interpreted incorrectly The Information Processing Harm
  • 8. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E What the person might think: “They spread or transfer information about me — more than I think they should!” Examples include: § Breach of confidentiality — breaking an agreement to keep information confidential § Disclosure — disclosing data to persons or entities the individual doesn’t expect § Exposure — revealing intimate information, as in a public exposure of private facts § Increased accessibility — amplifying the accessibility of info § Blackmail — a threat to disclose personal information § Appropriation — the use of an individual’s identity, such as using a name or picture, without the individual’s permission § Distortion — disseminating false or misleading information about individuals The Information Dissemination Harm
  • 9. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E What the person might think: “They come into my space and contact me, or tell me what to do!” Examples include: § Invasions into private affairs § Invasive acts that disturb an individual’s tranquility or solitude § Decisional interference — entering into an individual’s decisions regarding her private affairs § Unwanted email — did you know that unwanted communications into an individual’s personal space, including her email inbox, is considered a privacy invasion? § Unwanted phone calls —entering into an individual’s personal space by calling his personal phone number (especially if it is a mobile phone) § Entering a room without knocking The Invasion Harm
  • 10. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Once you’ve identified the possible HARMS... • Then use the Privacy PRINCIPLES to design controls/safeguards that appropriately address those harms
  • 11. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Sources of privacy principles • American Institute of Certified Public Accountants, Inc. (AICPA) and Canadian Institute of Chartered Accountants (CICA). Generally Accepted Privacy Principles. August, 2009. • U.S. Federal Trade Commission (FTC). Fair Information Practice Principles. 1998. • Organisationfor Economic Co-operation and Development (OECD). OECD Guidelines on the Protection of Privacy and TransborderFlows of Personal Data. 1980, revised 2013. • U.S. Department of Homeland Security (DHS). DHS Fair Information Practice Principles. 2008. • U.S. White House. Consumer Data Privacy in a Networked World (a.k.a. Consumer Privacy Bill of Rights). 2012.
  • 12. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Different terminology…but same general concepts DHS • Transparency • Individual Participation • Purpose Specification • Data Minimization • Use Limitation • Data Quality and Integrity • Security • Accountability and Auditing GAPP • Management • Notice • Choice and Consent • Collection • Use and Retention • Access • Disclosure to Third Parties • Security for Privacy • Quality • Monitoring and Enforcement Indiana University Privacy Principles: https://protect.iu.edu/online-safety/program/principles.html
  • 13. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E § Usually, the easiest way to address privacy harms is by identifying a way to inform, or provide “notice” to users of institutional practices around the data collected from them. § Posting a privacy policy on your website, or explaining on a form or login screen the plans for the data that users will enter, is a way to provide notice. The Notice Principle
  • 14. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E • Address privacy harms by identifying a way to obtain implicit or explicit consent from individuals with respect to the collection, use, disclosure, and retention of their information. • Choice may apply to "secondary uses"—that is, uses beyond the original reasons for which the data was provided. • Choice may be "opt in" (data will not be shared without consent), or "opt out" (user must request to stop the sharing or contacting). • Consider providing checkboxes to indicate consent to various uses. The Choice & Consent Principle
  • 15. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E • Privacy harms can be addressed by reviewing what data is being collected and ensure that you are collecting only the information needed to achieve the purposes identified, in support of the organization’s mission, and as outlined in the notice. • Especially critical are very sensitive or risky pieces of data such as Social Security numbers, credit card numbers, bank account numbers, and health information. – Do you still have a significant business purpose for it? – If not, STOP COLLECTING it! – If so, make sure you PROTECT it! The Collection Limitation Principle
  • 16. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E • Address privacy harms by reviewing what information you are disclosing to whom. What third parties do you share the information with? • Ensure that you are disclosing information to others only as outlined in the notice and only as consented to—either implicitly or explicitly. • Review contracts with third parties regularly, to ensure up-to-date and appropriate data protection language! The Disclosure Limitation Principle
  • 17. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Conclusion and Questions
  • 18. P UB LI C SA FE TY and I NSTIT UT IO NAL A S S U R A N C E Copyright Merri Beth Lavagnino, 2016. This work is the intellectual property of the author. Permission is granted for this material to be shared for non-commercial, educational purposes, provided that this copyright statement appears on the reproduced materials and notice is given that the copying is by permission of the author. To disseminate otherwise or to republish requires written permission from the author.