The Ethics of Notifiable STIs

Transcription

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2 The Ethics of Notifiable STIs Does Public Health Trump Privacy? Temberly Mitchell Leigh E. Rich

3 How far have we come? A brief history of reporting Getting tested today Ethical concerns Suggestions Outline

4 Trends in STI/HIV Rates How far have we come in prevention and treatment?

5 CDC Fact Sheet, February 2013

6 CDC Fact Sheet, February 2013

7 Chlamydia Rates by Sex United States, NOTE: As of January 2000, all 50 states and the District of Columbia have regulations that require the reporting of chlamydia cases Fig 1. SR, Pg 9

8 Chlamydia Rates by Age and Sex United States, Fig 5. SR, Pg 11

9 Gonorrhea Rates United States, Fig 11. SR, Pg 19

10 Gonorrhea Rates by Sex United States, Fig 12. SR, Pg 19

11 Gonorrhea Rates by Age and Sex United States, Fig 21. SR, Pg 21

12 Syphilis Reported Cases United States, Fig 29. SR, Pg 32

13 1 st /2 nd Syphilis by Sex, Sexual Behavior 33 Areas*, *32 states and Washington, DC,reported sex of partner data for 70% of cases of P&S syphilis for each year, MSM=men who have sex with men; MSW=men who have sex with women only Fig 30. SR, Pg 32

14 Genital Warts Initial Visits DR Offices United States, 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, Fig 46. SR, Pg 44

15 Genital Herpes Initial Visits DR Offices United States, 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, Fig 48. SR, Pg 45

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18 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

19 [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

20 A Brief History of Reporting Focusing on STIs

21 Étienne Jeaurat, 1745, La conduite des filles de joie à la Salpêtrière

22 Bernard Becker Medical Library Archives, , Female Hospital of Saint Louis Records

23 Wellcome Library, 1908

24 CDC National Prevention Information Network

25 states Chamberlain-Kahn ISHB / PHS STIs reportable Cases investigated Penalties states 6 Name Others Serial # or Initials % states Sex ed in schools

26 Post-WWI Congress fails to renew ISHB $4 million (1920) <$60,000 (1926) Culture of silence returns No more chemical prophylaxis

27 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

28 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

29 Getting Tested Today What types of testing are available?

30 Local and State Health Departments (Confidential) Planned Parenthood (Confidential) Testing Locations Mayo Clinic (Confidential) Home Testing (Anonymous and confidential)

31 Local / State Health Departments

32 Planned Parenthood

33 Mayo Clinic

34 Home Testing

35 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

36 What information is reported? Name Date Of Birth Address Phone numbers Ethnicity Race Gender at birth Race Disease name

37 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?

38 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.

39 Ethical Concerns Issues and questions of named reporting

40 Good data Scope of issue Earmark resources Duty to disclose Duty to warn Autonomy Consequentialism/Utility Privacy vs. Public Health?

41 Breaches occur Data uses and release Case management Within/among public health agencies Public disclosures Data releases Research Confidentiality

42 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

43 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

44 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

45 Suggestions

46 More studies, other models Greater transparency Moving more upstream Better provider patient communication Culture change

47 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?

48 Temberly Mitchell Leigh E. Rich Thank You