Andrew Vickers, a biostatistician at the Memorial Sloan-Kettering Cancer Center, New York, recently published an article in the New York Times about his experiences trying to get hold of raw data for cancer research: Cancer Data? Sorry, Canâ€™t Have It. In it he describes various difficulties he has encountered trying to get hold of the data that could “make an immediate and important impact on the lives of cancer patients”. Reasons for reluctance to share data included:
- potentially making researchers uncomfortable that their analyses could be undermined;
- refusal on the grounds that the original research team might “consider a similar analysis at some point in the future”;
- privacy concerns;
- red tape;
- unwillingness to co-operate;
- the “difficulty of putting together a dataset”;
- potential for misinterpretation or misrepresentation.
Given the enormous physical, emotional and financial toll of cancer, one might expect researchers to promote the free and open exchange of information. The patients who volunteer for cancer trials often suffer through painful procedures and harsh experimental treatments in the hope of hastening a cure. The data they provide ought to belong to all of us. Yet cancer researchers typically treat it as their personal property.
He cites the research of Dr John Kirwan at the University of Bristol into researchers’ attitudes towards data sharing:
He found that three-quarters of researchers he surveyed, as well as a major industry group, opposed making original trial data available. It is worth restating this finding: most scientists doing research on how best to help those in pain, or at risk of death, want to keep their data a secret.
Vickers makes a strong case for the importance of sharing data and for “robust debate” in the domain of cancer research. He notes the ease with which raw data can now be shared.
This is an excellent particular case of a more general line we take at the OKF (e.g. see Give Us the Data Raw, and Give it to Us Now and Dead Knowledge: why being explicit about openness matters).
Surely much is lost if data that could prove useful to cancer researchers sits collecting dust. Much could be gained if more trials data were open.
Dr. Jonathan Gray is Lecturer in Critical Infrastructure Studies at the Department of Digital Humanities, King’s College London, where he is currently writing a book on data worlds. He is also Cofounder of the Public Data Lab; and Research Associate at the Digital Methods Initiative (University of Amsterdam) and the médialab (Sciences Po, Paris). More about his work can be found at jonathangray.org and he tweets at @jwyg.