Hastings Center Report 46 (1):36-45 (2016)

Authors
Phil Brown
University of Manchester
Abstract
An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched to each other. Reidentification, the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants’ consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform—the Personal Genome Project—to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research
Keywords No keywords specified (fix it)
Categories (categorize this paper)
DOI 10.1002/hast.523
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 69,226
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

Wanted: Human Biospecimens.Karen J. Maschke - 2010 - Hastings Center Report 40 (5):21-23.

Add more references

Citations of this work BETA

Add more citations

Similar books and articles

Challenges of Web-Based Personal Genomic Data Sharing.Pascal Borry & Mahsa Shabani - 2015 - Life Sciences, Society and Policy 11 (1):1-13.
Bodies of Data: Genomic Data and Bioscience Data Sharing.Pilar N. Ossorio - 2011 - Social Research: An International Quarterly 78 (3):907-932.
Waving Goodbye to Waivers of Consent.Jeffrey R. Botkin - 2015 - Hastings Center Report 45 (6):inside back cover-inside back co.
Genomic Research Data: Open Vs. Restricted Access.David B. Resnik - 2010 - IRB: Ethics & Human Research 32 (1):1.
Consent for Data on Consent.Mollie Gerver - 2015 - Ethical Theory and Moral Practice 18 (4):799-816.

Analytics

Added to PP index
2015-12-17

Total views
29 ( #392,268 of 2,499,730 )

Recent downloads (6 months)
1 ( #418,066 of 2,499,730 )

How can I increase my downloads?

Downloads

My notes