The Ethics of Notifiable STIs
Does Public Health Trump Privacy?
Temberly Mitchell
Leigh E. Rich





How far have we come?
A brief history of reporting
Getting tested today
Ethical concerns
Suggestions
Outline
Trends in STI/HIV Rates
How far have we come in prevention and treatment?
CDC Fact Sheet, February 2013
CDC Fact Sheet, February 2013
Chlamydia—Rates by Sex
United States, 1992–2012
NOTE: As of January 2000, all 50 states and the District of Columbia have regulations that require the
reporting of chlamydia cases.
2012-Fig 1. SR, Pg 9
Chlamydia—Rates by Age and Sex
United States, 2012
2012-Fig 5. SR, Pg 11
Gonorrhea—Rates
United States, 1941–2012
2012-Fig 11. SR, Pg 19
Gonorrhea—Rates by Sex
United States, 1992–2012
2012-Fig 12. SR, Pg 19
Gonorrhea—Rates by Age and Sex
United States, 2012
2012-Fig 21. SR, Pg 21
Syphilis—Reported Cases
United States, 1941–2012
2012-Fig 29. SR, Pg 32
1st/2nd Syphilis—by Sex, Sexual Behavior
33 Areas*, 2007–2012
*32 states and Washington, DC ,reported sex of partner data for 70% of cases of P&S syphilis for each year, 2007-2012.
†MSM=men who have sex with men; MSW=men who have sex with women only.
2012-Fig 30. SR, Pg 32
Genital Warts—Initial Visits DR Offices
United States, 1966–2012
NOTE: The relative standard errors for genital warts estimates of more than 100,000 range from 18% to 30%.
SOURCE: IMS Health, Integrated Promotional Services ™. IMS Health Report, 1966–2012.
2012-Fig 46. SR, Pg 44
Genital Herpes—Initial Visits DR Offices
United States, 1966–2012
NOTE: The relative standard errors for genital herpes estimates of more than 100,000 range from 18% to 30%.
SOURCE: IMS Health, Integrated Promotional Services ™. IMS Health Report, 1966–2012.
2012-Fig 48. SR, Pg 45

Direct medical
◦ $16 billion

Curable STIs
◦ $742 million

Indirect
◦ Loss of productivity
◦ Pain and suffering
The Costs of STIs/HIVc
CDC Fact Sheet, February 2013
“[V]enereal diseases are inadequately
controlled, if controlled at all. …
[E]ven syphilis and gonorrhea for
which cures have been developed,
remain in dramatically high
proportions. … Why, if we have been
successful in fighting infectious
disease in this century, have we been
unable to deal effectively with
venereal diseases?”
Brandt, 1987, p. 3
A Brief History of Reporting
Focusing on STIs
Étienne Jeaurat, 1745, La conduite des filles de joie à la Salpêtrière
Bernard Becker Medical Library Archives, 1875-1886, Female Hospital of Saint Louis Records
Wellcome Library, 1908
CDC National Prevention Information Network

1916

Chamberlain-Kahn
22 states
◦ 1918-1919
◦ ISHB / PHS
 STIs reportable
 Cases investigated
 Penalties

1919
42 states
◦ 6 Name
◦ Others

1922
Serial # or Initials
46.6% states
◦ Sex ed in schools

Post-WWI
◦ Congress fails to renew ISHB
 $4 million (1920)
 <$60,000 (1926)

Culture of “silence” returns

No more chemical prophylaxis

Parran’s 5-point program
◦
◦
◦
◦
◦

Testing
Treatment
Contact tracing
Blood tests Marriage and Pregnancy
Comprehensive education
National Venereal Disease
Control Act (1938)
◦ $15 million over 3 years

Contact epidemiology

World War II
◦ Penicillin
◦ Education/Condoms

1950s
◦ “Character guidance”
◦ $16 million (1950)
◦ $3 million (1955)

1960s
◦ Lab-based reporting

1970s – today
◦ Named reporting grew
◦ Named HIV surveillance
Getting Tested Today
What types of testing are available?
Local and State
Health
Departments
Planned
Parenthood
(Confidential)
(Confidential)
Testing
Locations
Mayo Clinic
(Confidential)
Home Testing
(Anonymous and
confidential)
Local / State Health Departments
Planned Parenthood
Mayo Clinic
Home Testing
Anonymous Testing
• Your name is not required
• You are known only by a number or code.
Confidential Testing
• Your name is required
• Results may be shared only with people allowed to see your
medical records
• State health departments may also have access to test results
What information is reported?
Name
Date Of Birth
Address
Phone numbers
Ethnicity
Race
Gender at birth
Race
Disease name

Mail or fax a copy of the lab results to the
clinical manager, epidemiologist, charge
nurse, or public health professional.

A profile (new person) or update the
profile of existing client in the state
database - State Electronic Notifiable
Disease Surveillance System (SENDSS).
How and To Whom?

A client participant concurred, “I … fear
having my name on a list … somewhere.”

“A host of studies have documented
patient resistance to partner notification
efforts regardless of assurances of
confidentiality because of fear, privacy
desires, and, especially for women, the
risk of domestic violence.”
Ethical Concerns
Issues and questions of named reporting
Good data
• Scope of issue
• Earmark resources
Duty to disclose
Duty to warn
Autonomy
Consequentialism/Utility
Privacy vs. Public Health?

Breaches occur

Data uses and release
◦ Case management
◦ Within/among public health agencies
◦ Public disclosures
◦ Data releases
◦ Research
Confidentiality
Does informed consent occur?
• Nature and purpose
• Risks
• Consequences
• Alternatives (and consequences of not testing)
Do counselors explain and, if so, when:
• Notifiable diseases
• Named reporting
• How data are and could be used
Consent

“We tell them … the information you give stays
with us, we don’t give it to anybody else.”

“Everything will stay with us. We’re not gonna …
sell your names to any company.”

“And confidential, we explain that we use the
information for our grant writing and we use it
for demographic purposes. … None of these
names is … ever shared with anybody.”

“I’ve asked in meetings, is there some, you know
how like a salesman closes a sale? Do we have
something to close that sale for confidential
tests. … It’s hard to really push them.”
Grusky et al., 2005, pp. 162-163
“Despite the use of partner notification in
all of its forms, it has not been systematically
examined from legal, ethical, empirical, and
economic perspectives … [and] there exists a
scarcity of empirical and economic evidence
demonstrating its cost-effectiveness.”
Cost-Effectiveness
Gostin & Hodge., 1998, p. 13
Suggestions





More studies, other models
Greater transparency
Moving more upstream
Better provider–patient communication
Culture change
Think about any recent TV show or movie,
a book, or a song …
◦ How many touched on sex in some way?
◦ And did any of them include anything
about STIs or testing or even a conversation
between people about when and how and
why they wish to engage in sexual behavior?
◦ Is named reporting appropriate when we
send people back to a pusher environment?
Temberly Mitchell
[email protected]
Leigh E. Rich
[email protected]
[email protected]
Thank You