Lessons from a Family History

Given that my wife and I are highly overeducated physicians and Ashkenazi Jews that have been thinking about our family plans, we decided to go in for pre-conception Genetic Counseling.  Although neither of us have strong family histories of genetic diseases, we know enough (too much?) to know that we are at risk and would benefit from any advanced knowledge.  So far the experience has been very pleasant (because we haven't gotten any results yet) and quite instructive, teaching me a few lessons about health care.

Lesson 1: Glad it wasn't a physician
You can imagine that trying to get two doctors to a doctor's office during business hours takes just a little of scheduling wizardry.  I must compliment BIDMC's OB department for getting us in quickly and taking us back on schedule.  We were met by a genetic counselor who took both of our family histories and placed them on a pedigree.  While we do not have very large families, this is still a time-intensive detailed process. However, I felt that it proceeded very quickly and efficiently as our counselor was able to only ask necessary questions.  It was upon this realization that I was glad I was not speaking to a doctor.  Not that I have anything wrong with doctors, but I know that in order to justify certain levels of billing for a visit, they have to ask a lot of inane and useless questions.  (The family history normally falls in this category, for how is the family history of 95 year old woman going to help me figure out what is going on today).  Those useless questions are externally imposed by payment regulators, and while they seem harmless, are incredibly wasteful.  Now imagine all those useless questions for two people!  Needless to say I blocked out 2 hours for this visit and I was glad that we were out in 1 hour including blood work.  Had it been a doctor I can imagine it probably would not have gone so smoothly.

Lesson 2: What is the family history?
Now, not to knock it again, but in my field of Internal Medicine the family history often feels like an obligation, tacked on for billing purposes and not really helpful to diagnosis or management.  We satisfy the requirement by asking at least one question "No one in the family has cancer, right?" But then I got to thinking about information in an ideal medical system.  Although I have not seen this implemented, we have the ability to link medical records together for the purposes of keeping a true family history.  For example, let's say that both you and your mother see doctors who have an integrated medical record.  She could be in New Jersey and you in Boston, but information knows no geography.  Now, if our record knows that she is your mother, then could it not also import her medical history into your family history?  Could this be repeated for entire family trees, making the family history a truly useful part of the history?  I know, I know, HIPAA, privacy, etc., often unnecessary hurdles to good care and information.  We could still maintain privacy in a number of ways: having the information queried but not present (i.e. you could "ask the record if anyone had colon cancer without identifying who exactly had it").

And yes, I checked with my wife before posting this.