Human Subjects Research and the Internet
The Internet offers a variety of rich tools for the conduct of human subjects research, but it also presents significant challenges for the protection of research subjects. In particular, researchers using the Internet to interact with subjects need to be especially cautious about securing informed consent and preserving the confidentiality of private, identifiable information.
They also often need to ensure that their research protocols present no more than minimal risk to subjects, especially when the risks are emotional in nature and might require additional support to subjects in the event of harm.
These and other considerations can affect the entire design of a project, including recruitment, privacy and confidentiality provisions, instrument design, informed consent, data collection, data storage and disposal, and other factors.
Informed consent with online surveys
When conducting online surveys, investigators frequently face a barrier in collecting signed consent agreements from their subjects. Federal law allows an IRB to waive the requirement for a signed consent agreement under one of two conditions:
- That the only record linking the subject and the research would be the consent document and the principal risk would be potential harm resulting from a breach of confidentiality. Each subject will be asked whether the subject wants documentation linking the subject with the research, and the subject's wishes will govern; or
- That the research presents no more than minimal risk of harm to subjects and involves no procedures for which written consent is normally required outside of the research context.
The IRB may choose to waive signed consent documentation for Internet-based surveys if it meets one of these two conditions. Consult the IRB administrator for more information about documentation waivers.
Confidentiality, anonymity, privacy, and data security
Investigators proposing to conduct research over the Internet must demonstrate to the IRB that their information collection methods offer adequate security to protect the privacy of subjects and uphold any promises of confidentiality or anonymity.
Email, in particular, is often not a secure or private form of communication and in general is not a secure method of protecting the information of research participants. Online survey utilities may offer varying levels of security, but the investigator is responsible for understanding and explaining to the IRB why a particular survey utility provider offers adequate protection of subjects.
Disseminating findings on the Internet
In many instances, researchers also wish to use the Internet to disseminate their findings. Researchers must ensure that they have appropriately guarded their subjects' confidentiality and privacy before publishing any research. Publishing is permanent. With the Internet, this imperative is compounded by the ease with which information--including damaging information--can proliferate.
For concise reviews of the ethical considerations of Internet-based research, as well as practical tips for research design, see Florida Atlantic University's Guidelines for Computer & Internet-Based Human Subjects Research and University of Massachusetts at Amherst's Online Survey/Survey Research Guidance. These guidelines include sample informed consent language for online surveys that might be used to request a waiver of the signature requirement for informed consent.