Skip to main content Accessibility help
×
Home
Hostname: page-component-544b6db54f-5rlvm Total loading time: 0.22 Render date: 2021-10-22T03:10:20.441Z Has data issue: true Feature Flags: { "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true, "metricsAbstractViews": false, "figures": true, "newCiteModal": false, "newCitedByModal": true, "newEcommerce": true, "newUsageEvents": true }

8 - The Special Case of Open Data

from Part II

Published online by Cambridge University Press:  30 December 2016

Sharona Hoffman
Affiliation:
Case Western Reserve University School of Law, Ohio
Get access

Summary

I recently logged onto a website called the “Personal Genome Project” and looked at the “Participant Profiles” section. To my surprise, several profiles disclosed the name of the patient along with his or her date of birth, sex, weight, height, blood type, race, health conditions, medications, allergies, procedures, and more. Thus absolutely anyone with a computer would be able to view all these details. Other profiles excluded the name of the participant but provided all the other details, which could potentially allow a clever and motivated viewer to identify the patient.

Earlier chapters discussed medical big data use by professional researchers. This chapter focuses on the phenomenon of “open data.” Patient-related medical data can now be easily found on the Internet. With its help, ordinary citizens interested in scientific research are taking matters into their own hands. This is the era of citizen science and do-it-yourself biology. “Citizen science” is “the practice of public participation and collaboration in scientific research” through data collection, monitoring, and analysis for purposes of scientific discovery, usually without compensation. “Do-it-yourself biology” is an international movement “spreading the use of biotechnology beyond traditional academics and industrial institutions and into the lay public.”

Increasingly, government and private-sector sources are supplying data collections to the public, and this supply stream will expand considerably in the future. I will call publicly available resources “public-use data” or “open data” in this chapter. Open data are a global phenomenon and are furnished by entities such as the World Health Organization, the UK government, the Canadian Institute for Health Information, Japan's National Institute of Genetics, and many more. The pages that follow will describe representative open data sources, analyze their benefits and risks, and formulate recommendations for responsible handling of open data.

PUBLICLY AVAILABLE BIG DATA SOURCES

Many large databases offer public access to patient-related health information. These databases have been established by federal and state governments as well as by private-sector enterprises. No comprehensive catalogue of these sources exists. This section focuses on a sample of US databases that feature public-use medical data.

Type
Chapter
Information
Electronic Health Records and Medical Big Data
Law and Policy
, pp. 168 - 197
Publisher: Cambridge University Press
Print publication year: 2016

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Send book to Kindle

To send this book to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle.

Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Send book to Dropbox

To send content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about sending content to Dropbox.

Available formats
×

Send book to Google Drive

To send content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about sending content to Google Drive.

Available formats
×