Interlude - Index of

172 | Grown-Up Company
be stored for the life of the patient plus seven years. There are
also many laws about privacy. But questions of data ownership
are still troublesome. Should Amazon own the record of all the
books I have ever bought, or should I? I think of my financial
records as mine, but my bank and my broker think they own
them. Medical records are even more personal. Are they mine
or my doctor’s?
Professor Deirdre Mulligan from the University of California,
Berkeley, argues that ownership is the wrong mental
model. I have a strong interest in my own medical records, but
my doctor does too: the collection of medical records that he
has created over the years documents his career. In a malpractice
suit, he may need them to demonstrate his competence.
When a medical center comes under scrutiny, the records
of all doctors and patients at the center may be required to
understand the patterns of care.
It is better to think in terms of rights and responsibilities
associated with data, according to Mulligan. As a patient, I have
the right to access my medical records, to transfer them to a
new doctor, and so on. My doctor and the medical center have
rights as well, but also responsibilities. They must keep the
records safe and private. There is a fuzzy, blended combination
of rights and responsibilities that are shared between my
doctor, my medical center, and me.
As we store more private information about people, data
management becomes entangled with philosophical issues of
ownership, rights, responsibilities, and ethics. None of the
technical issues of data management go away, but to really
help our customers solve their problems, we also have to
focus on managing data rights and responsibilities. Maybe