Privacy 3 Some Recent Privacy Issues US Govt

Privacy 3

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

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

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

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

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

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

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

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

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

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

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 $1 T industry

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

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

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

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

Minors • How are minors targeted? • COPA • Toy. Smart case

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

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

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

The Biotech Industry • Osteoporosis drug • Informed consent • Ethical issues

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

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

Genetic Discrimination • • Genetic Determinism Employment Discrimination Insurance Discrimination Genetic Information and Nondiscrimination Act

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