A pregnant woman, Rhonda Kaufmann, who received services and support
from a WIC program was offered prenatal care subsidized by the county
government at a local HMO. When she went to the HMO for the first
visit, she was asked if she would agree to participate in a survey
designed to help evaluate the care she received and to release the
records of her prenatal, delivery and postpartum care for that purpose.
The county agency hired a sociologist, Dr. Sue Staffee, to conduct the
survey and to do the evaluation. There were a number of agencies
providing prenatal care, and the county government wanted to determine
which agencies were most effective. The county agency permitted the
sociologist to publish results from the evaluations since she was
interested in studying the access to health care across various groups
in the county. A year after she had completed the evaluation, she was
contacted by Jane Thipen, one of Dr. Staffee's graduate students. The
graduate student explained that she was analyzing the data from the
evaluation survey for her dissertation on social factors related to low
birth weight. She asked if she could make an appointment to interview
this woman further and promised to pay her for her time. The woman felt
that her privacy had been violated and complained to officials of
1. Whose responsibility was it to insure that the
privacy of the patient not be violated?
2. What actions might have been taken to do so?
3. Are there conditions under which the sociologist
could ethically give her graduate student access to this data?
Reflect on the above questions and form your
own answers before clicking the Discussion
key to review the commentary provided with this case.
No matter how cavalierly the HMO or the county government is with
regard to confidentiality, it is the sociologist's obligation either to
develop a strategy to protect the subjects' privacy or to discuss the
issues with representatives of the HMO and county government and if
strategies cannot be developed, to refrain from conducting this
research. The sociologist needs to inform the subject completely of the
use to which the data will be put, who will have access to it, and how
confidentiality will be protected. As a matter of good practice, the
sociologist should also negotiate a consortial agreement with the HMO
and the county government with regard to the data. Questions such as
who ultimately "owns" the data, where and in what form it is to be kept
after the evaluation study and the researcher's differential access
study are completed, and where and how it will be stored thereafter all
need to be resolved.
Having completed the study of differential access which she was given
permission to undertake, the sociologist should do no further studies
involving this data unless she has made arrangements with the HMO and
the county to do so and unless she has the consent of the subjects.
Consent also must be obtained for other scholars, including graduate
students to have access to and use of the data, especially for purposes
not originally foreseen. If such action is not taken the subject
certainly has every right to feel that her privacy has been violated.