Privacy, confidentiality, and health research / William W. Lowrance.

Format:

Book

Author/Creator:

Lowrance, William W., 1943- author.

Series:

Cambridge bioethics and law ; 20.

Cambridge bioethics and law ; 20

Language:

English

Subjects (All):

Medical records--Law and legislation.

Medical records.

Data protection--Law and legislation.

Data protection.

Medicine--Research--Law and legislation.

Medicine.

Physical Description:

1 online resource (xiv, 188 pages) : digital, PDF file(s).

Other Title:

Privacy, Confidentiality, & Health Research

Place of Publication:

Cambridge : Cambridge University Press, 2012.

System Details:

text file

PDF

Summary:

The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.

Contents:

Introduction

Data, biospecimens, and research

Privacy, confidentiality, safeguards

Broad privacy and the data protection regimes

Healthcare, public health, and research regimes

Consent

Identifiability and person-specific data

Genetics and genomics

Safeguards and responsibilities

Data sharing, access, and transfer

Ways forward.

Notes:

Title from publisher's bibliographic system (viewed on 05 Oct 2015).

Other Format:

Print version:

ISBN:

9781139107969

Access Restriction:

Restricted for use by site license.