Situation
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. She agreed.
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 county government.
Questions
- Whose responsibility was it to insure that the privacy of the patient not be violated?
- What actions might have been taken to do so?
- Are there conditions under which the sociologist could ethically give her graduate student access to this data?
Discussion
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. It has.
