The chief risk in sharing data is that, if it escapes from the research realm or falls into the wrong hands, it can harm the individual whose data has been shared.
foolproof. For example, in many cases, a large dataset may include people with rare medical conditions or only small numbers of specific ethnic minorities that machine-learning algorithms could use to identify, within certain error margins, a particular individual. The most frightening possibility to me is that some people may actually want to link the data to an individual. It is not far- fetched to worry that insurers, employers, or law enforcement agencies might want your personal data. Indeed, brain scans have already been used in court as evidence. As recently as February, the journal BioTechniques published an article online entitled “Inside the brain of a killer: the ethics of neuroimaging in a criminal conviction.” A study published in Proceedings of the National Academy of Sciences in March 2017 found that, in a laboratory setting, brain scans were able to distinguish between hard-core criminal intent and simply reckless behavior. But a writer in Science cautioned that the approach was “far from being ready for the courtroom.” Calhoun and his co-authors side more with the rights of individuals than with the researchers and institutions that collect data from them, but they seek a balance that will both protect their privacy and allow important science to advance. They call for the research community to work together with attorneys and ethicists to determine how best to make
important advances in medical research, while protecting the data of human subjects. There is no question that data sharing will entail some level of risk. A leak of sensitive information might prove harmful to an individual. But the authors worry that concerns have outpaced reality. “While we do not intend to minimize the importance of data security,” they write, “there is a certain fear that has emerged regarding data sharing where it has become greater than life.” Instead of being real monsters to worry about, they are more like imaginary “monsters under the bed.” The best path forward, the authors say, is for researchers, through discussions with participants and information provided on consent forms, to let participants decide whether they are willing to have their data shared, and under what circumstances. There may be no direct benefit to them, but those willing to share would be doing science and their fellow citizens a seminal service. l Phil Boffey is former deputy editor of the New York Times Editorial Board and editorial page writer, primarily focusing on the impacts of science and health on society. He was also editor of Science Times and a member of two teams that won Pulitzer Prizes. The views and opinions expressed are those of the author and do not imply endorsement by the Dana Foundation.
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ILLUSTRATION: DANIEL HERTZBERG
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