Privacy in the Information Age

5 April

• Areas where the federal government has stepped in and tried to legislate aspects of individual privacy:
  1. FERPA: 1974. Basically anything about you that is maintained by the university is an educational record (e-mails, maybe even). It covers sharing of information between institutions. Also things like: can info about a student's binge drinking be revealed to the parents? In general, unless there's an exception, FERPA says no. See the VA Tech incident: to what extent should a student's papers be shared with law enforcement (i.e., if they are writing something scary)? Most will share if necessary to prevent a harm. There's no individual right of action-- it's just a risk of losing funding, but this has never actually happened. The records protected have to be "maintained by an educational institution:" that might not cover student e-mails, etc. But the main question with FERPA is really how broadly it sweeps.
  2. HIPAA: protects "any identifiable information related to past, present, or future physical or mental health of an individual, treatment of an individual, or payment for healthcare. It only really covers information transmitted electronically. If you pay in cash in a small town, there might not be HIPAA-covered info. Transmission of info between providers for treatment purposes is permissible. Doesn't apply to things like athletic trainers.
  3. GINA: genetic information nondiscrimination act. Having a gene that predicts a condition isn't the same as having a disability under the ADA, and it's also not something covered under HIPAA, so we needed another law. 2008. There are definitions of genetic information and genetic tests-- they are horribly broad. Or even contradictory, at least as they've been interpreted.
• Whalen v. Roe
  The constitutional interest in information privacy. This is the NY drug database case.

  Basically, maybe you have a right to this kind of privacy, but (and it's kind of a rational basis analysis, although that phrase isn't used) the state's interest in regulating these drugs prevails. The court recognizes that some laws might violate the constitutional interest, but that this one does not.

• Nice point: privacy laws are a nice low-cost (for the government) way to make voters happy.
• Genetic information-- there are both state and federal statutes governing it. Is genetic information different from other kinds of information?

  What do we think of it?

  1. Predisposition/markers for certain diseases
  2. Full genome mapping
  3. Family history (we give this to doctors now)
  4. Forensic identification
  To what extent is genetic data exceptional? Why do people say it deserves special treatment?
  1. Predictive of disease
  2. Unique identifier
  3. Can't be changed
  4. Can be used to discriminate
  5. Reveals information about family members, not just the person tested
  6. Can be gotten from small samples
  7. Easy to use for purposes other than what it's collected for
  Are those things all true, or are they just perceptions? At the very least, they're not totally unique to genetic information.

  5%-10% is the current rate of non-paternity. There's a .1%-.01% rate of non-maternity also (baby swaps, intentional or unintentional).

• To what extent is there genetic determinism? There's probability, of course, but there are some things (mendeleian genes) that are pretty solid. Of course, there are tests other than genetic tests that are cheaper and more helpful for these traits.
• Interesting theory: if you knew you weren't at risk for certain conditions, you wouldn't buy insurance for them.
• All kinds of information is genetic: hematocrit, ekg, etc., all tell you things about a family.
• Note that we need to be concerned not only about defects, but also enhancements.
• Lots of this may be moot, actually, now that we have universal coverage...
• There are hidden costs to the privacy laws: research gets a lot more expensive.
• State laws, too: § 111.371 (employment) § 630.95 (insurance).