Who Owns the Data?


Date & Time

Wed, 03/03/2010
5:30pm-7:00pm

Overview

The internet has dramatically changed the way scientists and the public access information. For example, while scientific information about diseases, treatments, and side-effects were previously only accessible to scientists and physicians, a great deal of information on science and medicine is now easily available on to everyone on the web. It seems obvious that the public should have access to this scientific information both because it can allow more informed decisions about personal healthcare, and because a great deal of the research was supported by taxes. Thus, there have been arguments that all scientific data acquired using public funds should be freely available to the public.

However, some scientists find this idea worrisome for several reasons. It demands considerable time and effort to acquire the data for a research project, and once the data is available it may take even more time to sift through the data to uncover the important conclusions. If the data is released before the researchers have been able to thoroughly evaluate it and publish their results, the other scientists may be able to benefit from the data before the researchers who invested so much time and effort in the research. Publication in peer-reviewed journals ensures that the results and conclusions are considered valid by other experts, thereby ensuring that misleading conclusions are not promulgated. There are also concerns that public access to scientific data before the research is complete may result in misinterpretation or misuse by activists — an issue for both biomedical research and other fields, such as environmental research. In addition, premature release of data could compromise the ability to patent key findings, diminishing the interests of biotech or pharmaceutical companies that might otherwise use these findings to develop new types of medical therapies.

Thus, there is an ethical conundrum of “Who owns the data?” Does the public support for research and the potential public benefit outweigh the concerns of some researchers? Could the immediate release of unvalidated data or conclusions actually harm the public? Are there ways that we could resolve this conflict?

KPBS These Days: “Science In The Information Age”

 

Speaker

Philip Bourne
UCSD, Skaggs School of Pharmacy and Pharmaceutical Sciences

Philip E. Bourne, PhD is a Professor in the Department of Pharmacology and Skaggs School of Pharmacy and Pharmaceutical Sciences at the University of California San Diego, Associate Director of the RCSB Protein Data Bank and an Adjunct Professor at the Burnham Institute. He is a Past President of the International Society for Computational Biology. He is an elected fellow of the American Medical Informatics Association. He is the Founding Editor-in-Chief of the open access journal PLoS Computational Biology and a long standing member of the National Science Foundation, National Institutes of Health and Genome Canada panels responsible for reviewing proposals relating to computational biology. He is a past member of the US National Committee for Crystallography, past chairman of the International Union of Crystallography Computing Commission IUCrCC and past chairman of the American Crystallography Association (ACA) Computing Committee.

Aziz Boxwala
UCSD, Biomedical Informatics

Aziz Boxwala, MD, PhD is the Head of Section on Clinical Informatics and Associate Professor in the Division of Biomedical Informatics at UCSD. Dr. Boxwala directs the efforts to deploy informatics tools and software applications to support clinical and translational research including data warehouses, biospecimen repositories, and clinical trials management systems. Dr. Boxwala also conducts research in clinical decision-support and management of biomedical knowledge. The objective of this research is to improve the quality of healthcare delivery. Prior to joining UCSD, he was a faculty member at Harvard Medical School.