1. Privacy 3

3. Some Recent Privacy Issues US Govt. v. Google http://tor.eff.org/

4. Role of Medical Records What are legitimate uses of medical records? –To provide continuity of care –Insurance –Employment –Public Health –Protect against fraud

5. Tradeoffs Pertinent to Computerizing Medical Records Computerization of patient records holds the potential for efficient timely sharing of critical medical information How does computerization of medical records introduce privacy threats? –Points of accessibility –Databases and copies of records –Proliferation of a personal identifier (SSN) –Scope creep

6. The Insurance Industry Power asymmetry and treatment release forms The Medical Information Bureau –MIB codes –Use of MIB information Physicians caught in the middle –Legal and organizational reporting requirements –Hippocratic oath

7. Recent Testimony on Medical Privacy Use of medical information by employers High percent of people who discontinue medical treatment because of privacy concerns Inappropriate collection of DNA

8. Some HIPAA Privacy Implications HIPAA sets a national standard Guarantees personal access to medical records Privacy policies Some recourse

9. Some HIPAA Compliance Issues Online pharmacies – study showed they were generally non-compliant, e.g. no privacy notices Pharmacies – direct mail letters ghost written by pharmaceutical companies suggesting that a person may want to refill a prescription or consider an alternative Non-compliance with respect to HIPAA security rules – April 20 th compliance deadline

10. HIPAA Notification Readability Text analysis study shows that many patients will have difficulty understanding HIPAA notification –Written for people with 2 – 3 years of college –Complex writing style –Long sentences –Difficult vocabulary

11. National Health Information Network If done the following are critical: Privacy and security of data Accuracy of medical record data How patient records are identified Other issues: Access to the system by 3 rd parties Patient rights Function creep Who owns the data Government access – e.g. Patriot Act

12. Medical Information and Adoption Rights Should those who are adopted have the right to know who their biological parents were? What’s at stake?

13. Direct Marketing The case against intrusive marketing – the desire to control information about yourself The case for direct marketing – free speech, provides a service, it’s a $1T industry

14. The Post Office and Direct Marketing Change of address information Bulk mail

15. Affinity Programs and the Like Supermarket data – The Farmer Jack card Pharmaceutical data Warranty data Rebates

16. Opt-in versus Opt-out What’s the difference? Who cares? Practical problems with opt-out Web pop-up example

17. Action against Direct Marketers Exercise anonymity Publicize and litigate Track them using seeded names Make use of current laws and advocate for new laws www.junkbusters.org

18. Minors How are minors targeted? COPA ToySmart case

19. Who Owns Your Information? Considering your name as property What is property? Pros and cons of a royalty scheme for marketers using your name

20. The Avrahami Case Sued for using his name without prior consent (rental of subscription lists) DMA argued: 1) it’s common practice, 2) Avrahami should have opted out Case remanded to a different court – eventually dismissed because his name had been misspelled

21. Do You Own Your Body? Where does it begin and end? Is extracted genetic information yours? HeLa cells and Mo cells Locke’s desert/labor theory of property

22. The Biotech Industry Osteoporosis drug Informed consent Ethical issues

23. Genetic Testing Genetic tests – pluses and minuses –Tests on prisoners have resulted in the release of several wrongfully convicted individuals –Use of genetic risk information to deny employment and insurance to healthy Americans

24. Expansive Use of Genetic Tests New tests in the past 15 years: cystic fibrosis, Duchenne muscular dystrophy, fragile X syndrome, Huntington’s chorea, Lou Gehrig disease, etc. Some advocate population wide genetic cancer screening American Council of Life Insurance says insurance companies should have access to genetic information about cancer predispositions to assign risk categories

25. Genetic Discrimination Genetic Determinism Employment Discrimination Insurance Discrimination Genetic Information and Nondiscrimination Act

26. Genetic Information and Ethnicity Discrimination based on a predisposition for some medical condition associated with ethnicity Ashkenazi Jews The Iceland experiment