Data & Civil Rights: Health Primer

Data & Civil Rights Conference, October 2014

8 Pages Posted: 24 Dec 2014

See all articles by Alex Rosenblat

Alex Rosenblat

Data & Society Research Institute

Kate Wikelius

The Leadership Conference on Civil and Human Rights

Danah Boyd

Data & Society Research Institute; Microsoft Research

Seeta Peña Gangadharan

New America Foundation - Open Technology Institute

Corrine Yu

The Leadership Conference on Civil and Human Rights

Date Written: October 30, 2014

Abstract

Data plays a central role in both medicine and insurance, enabling advances and creating new challenges. Although legislative efforts have attempted to protect the privacy of people’s health data, many other kinds of data can reveal sensitive health information about an individual. People’s medical conditions or health habits can be inferred from many sources, including their purchases, phone call patterns, fitness tracking apps, posts on social media, and browsing histories. Sometimes, medical information that reveals sensitive information about an individual can be linked to the medical state of a relative. However, accuracy of these inferences may be a problem, and inaccurate inference can result in social stigma and harmful reputational effects on the wrongly categorized individual. In addition, the kinds of inferences generated and used by marketers and insurance companies may not be useful when applied to the context of patient care. Not only does misuse of data have consequences for individuals seeking fair access to healthcare, but inappropriate practices also erode productive efforts to use data to empower people, personalize medicine, and develop innovations that can advance healthcare.

Keywords: patient data, privacy, big data, data practices, sensitive data, privacy

Suggested Citation

Rosenblat, Alex and Wikelius, Kate and Boyd, Danah and Gangadharan, Seeta Peña and Yu, Corrine, Data & Civil Rights: Health Primer (October 30, 2014). Data & Civil Rights Conference, October 2014. Available at SSRN: https://ssrn.com/abstract=2541509 or http://dx.doi.org/10.2139/ssrn.2541509

Alex Rosenblat

Data & Society Research Institute ( email )

36 West 20th Street
New York,, NY
United States

HOME PAGE: http://www.datasociety.net

Kate Wikelius

The Leadership Conference on Civil and Human Rights ( email )

Danah Boyd (Contact Author)

Data & Society Research Institute ( email )

36 West 20th Street
11th Floor
New York,, NY 10011
United States

HOME PAGE: http://www.datasociety.net

Microsoft Research ( email )

One Memorial Drive, 12th Floor
Cambridge, MA 02142
United States

HOME PAGE: http://research.microsoft.com/

Seeta Peña Gangadharan

New America Foundation - Open Technology Institute ( email )

1899 L St., N.W., Suite 400
Washington, DC 20036
United States

Corrine Yu

The Leadership Conference on Civil and Human Rights ( email )

1629 K Street NW
10th Floor
Washington, DC 20006
United States

HOME PAGE: http://www.civilrights.org/

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