Privacy Issues in Medical Records and Genetic Testing

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 20th 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 3rd 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