Informed Consent in Health Research in the Online Environment (Panel)



Jeffrey Kahn* Effy Vayena*
Anna Mastroianni* Dan O'Connor*
Jeffrey Kahn*, Johns Hopkins Berman Institute of Bioethics, Baltimore, United States
Effy Vayena*, Institute for Biomedical Ethics, Univ. of Zurich, Zurich, Switzerland
Anna Mastroianni*, Univ. of Washington--School of Law and Institute for Public Health Genetics, Seattle, United States
Dan O'Connor*, Johns Hopkins Berman Institute of Bioethics, Baltimore, United States


Track: Research
Presentation Topic: Ethical & legal issues, confidentiality and privacy
Presentation Type: Panel
Submission Type: Panel Presentation

Building: Mermaid
Room: Room 4 - Queenshithe
Date: 2013-09-23 02:45 PM – 03:30 PM
Last modified: 2013-09-25
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Abstract


Research for health-related purposes in the online environment is growing at an explosive pace. This ever expanding environment currently includes health research-related websites (e.g., patientslikeme.com) and consumer-oriented health websites (e.g., 23andme.com), as well as technologies that can collect web users' search data (e.g., Google Trends) or scan social media (e.g., Twitter, Facebook). Each category and example raises particular challenges for the traditional paradigm of informed consent in research, which rests on the core ethical and legal constructs of ensuring that a research participant is fully informed and understands the proposed research, and enters into a study voluntarily. However, the consent processes embedded in traditional human subjects research did not anticipate applications in online environments. The evolving research paradigm in the online environment instead has largely employed consumer-oriented approaches to assuring "agreement" with the terms of service. This approach is better characterized as a requirement for entry and use of a site than as a representation of meaningful consent as it is typically mandated when individuals share personal data for research purposes. An analysis of informed consent in this environment is critical to ensure the ethical conduct of research. Such an analysis requires consideration of how the conceptual goals of the consent process are being applied in online efforts, whether and how the conceptual goals can be achieved, how notions of privacy are perceived in the online environment, and the legal and policy implications of the current regulatory framework for research in online settings. Any future missteps in this area will result in consumer and participant distrust, ultimately affecting the potential for public health benefits as well as researcher access to valuable data.

This panel provides an opportunity to examine the challenges for informed consent when novel health research is conducted in the online environment. The panel will discuss (1) pilot findings regarding consent practices in online environments where health-related research is taking place (Effy Vayena, PhD, Senior Fellow at the Institute of Biomedical Ethics, Univ. of Zurich), (2) an examination of the conceptual bases of informed consent in research and their application in the online environment (Jeffrey Kahn, PhD, MPH, Professor of Bioethics and Public Policy at Johns Hopkins Berman Institute of Bioethics), (3) the perceptions and expectations of privacy in the context of social media and their implications for consent in the online research environment (Dan O'Connor, PhD, Research Scholar at the Johns Hopkins Berman Institute of Bioethics), and (4) the legal and policy implications of the existing regulatory framework for informed consent in research as research moves into the online environment (Anna Mastroianni, JD, MPH, Professor at the University of Washington School of Law and Institute for Public Health Genetics).


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