Prof. Maya Goldenberg talked to the Globe and Mail for an article examining the ethics of health-care data sharing and our privacy.
The article, written by Catherine Stinson, a senior policy associate at the Mowat Centre, looked at why it’s so important for our health-care data to remain secure, and talked about future data storage, sharing and access.
Stinson talked about how patient data sharing may help in treatment and other scenarios where a patient might be stigmatized.
She said the European Union’s General Data Protection Regulation allows individuals to have control over who gets to see their data, how long it may be used and how it is kept on file.
A professor in U of G’s Department of Philosophy, Goldenberg said that in some health-care circles, there are efforts to chip away at informed consent because some say “consent bias” distorts research outcomes or that gaining consent is prohibitively burdensome for some studies — and even that consent may be unnecessary since the information is already available. She said that these worries stem from too much enthusiasm around big data and that there is no moral justification for lessening ethical standards in how health data is managed.
Goldenberg studies bioethics, philosophy of science and philosophy of medicine.