ENTRIES TAGGED "privacy"
In the age of big data, Deven McGraw emphasizes trust, education and transparency in assuring health privacy.
Society is now faced with how to balance the privacy of the individual patient with the immense social good that could come through great health data sharing. Making health data more open and fluid holds both the potential to be hugely beneficial for patients and enormously harmful. As my colleague Alistair Croll put it this summer, big data may well be a civil rights issue that much of the world doesn’t know about yet.
This will likely be a tension that persists throughout my lifetime as technology spreads around the world. While big data breaches are likely to make headlines, more subtle uses of health data have the potential to enable employers, insurers or governments to discriminate — or worse. Figuring out shopping habits can also allow a company to determine a teenager was pregnant before her father did. People simply don’t realize how much about their lives can be intuited through analysis of their data exhaust.
To unlock the potential of health data for the public good, informed consent must mean something. Patients must be given the information and context for how and why their health data will be used in clear, transparent ways. To do otherwise is to duck the responsibility that comes with the immense power of big data.
In search of an informed opinion on all of these issues, I called up Deven McGraw (@HealthPrivacy), the director of the Health Privacy Project at the Center for Democracy and Technology (CDT). Our interview, lightly edited for content and clarity, follows. Read more…
In a world of big, open data, "privacy by design" will become even more important.
A few weeks ago, Tom Slee published “Seeing Like a Geek,” a thoughtful article on the dark side of open data. He starts with the story of a Dalit community in India, whose land was transferred to a group of higher cast Mudaliars through bureaucratic manipulation under the guise of standardizing and digitizing property records. While this sounds like a good idea, it gave a wealthier, more powerful group a chance to erase older, traditional records that hadn’t been properly codified. One effect of passing laws requiring standardized, digital data is to marginalize all data that can’t be standardized or digitized, and to marginalize the people who don’t control the process of standardization.
That’s a serious problem. It’s sad to see oppression and property theft riding in under the guise of transparency and openness. But the issue isn’t open data, but how data is used.
How businesses can confront the ethical issues tied to massive aggregation and data analysis.
"Ethics of Big Data" authors Kord Davis and Doug Patterson explore ownership, anonymization, privacy, and ways to evaluate and establish ethical data practices within an organization.
The 1940 census makes its data debut, and the White House shows off its data initiative.
In this week's data news, the National Archives releases the data from the 1940 Census, the federal government outlines its big data plans, and an app uproar leads to good thinking on privacy and sharing.
Big data introduces unique healthcare challenges and opportunities.
The proliferation of digital health information, including both clinical and claims information, is creating large datasets and significant opportunity.
Infochimps opens up a data platform, de-anonymization via writing style, data for the public good.
Infochimps adds a platform-as-a-service product, researchers show how writing style can identify specific people, and a new report looks at how data can help governments and citizens.
Hadoop, security and open data defined the data world in 2011.
From wide adoption of Hadoop to personal data empowerment, Radar data correspondent Audrey Watters looks back on the data trends that shaped 2011.
GreenGoose looks to unlock the data in everyday activities.
Put a GreenGoose sticker on an object, and just like that, you'll have an Internet-connected sensor. In this interview, GreenGoose founder Brian Krejcarek discusses stickers as sensors and the data that can be gathered from everyday activities.
Author Terence Craig on why data transparency trumps anonymization.
Ironclad digital privacy isn't realistic, argues "Privacy and Big Data" co-author Terence Craig. What we need instead are laws and commitments founded on transparency.
Solon Barocas on data mining's reputation and the ethics of data collection.
Solon Barocas, a doctoral student at New York University, discusses consumer perceptions of data mining and how companies and data scientists can shape data mining's reputation.