Privacy

Historically, privacy has been defined as the right to be left alone. An increasingly technological society has extended privacy to include rights to be free from surveillance, to make private communications, and to have autonomy and control over one's own body.

Most research ethics codes have established the need for privacy for research participants. Privacy is also a fundamental human right enshrined in the Universal Declaration of Human Rights. Although most people have an expectation of privacy in their lives, it is also understood that social, political, and technological changes are threats to privacy: Increased population density, antiterrorism initiatives, and the internet all pose challenges to privacy. When privacy is lost, it is often impossible to retrieve.

The moment a researcher begins to collect information from participants, privacy is being encroached upon. When researchers offer to respect the privacy of participants, they are giving participants the right to decide how much information to share and how it will be used. This discussion usually takes place through the process of informed consent. That is, participants are given an explanation about the kind of personal information they are being asked to share, how that information will be protected from other parties, what the information will be used for, and how it will be used.

A common way to protect participant privacy is by offering confidentiality—an assurance that information shared with a researcher will not be disclosed in a way that can publicly identify the source. This can be accomplished by using the least amount of personal identifiable information to complete the research purpose. Researchers should code information about participant identity and store it separately from non-identifying data. Sometimes it is unnecessary for a researcher to know the true identity of a participant, and therefore a pseudonym can be employed.

Research that involves sensitive topics has the greatest privacy imperative. George Radwansky, former Privacy Commissioner for Canada, has said that information in health research must remain within the program of study and must not find its way into the hands of an “individual's employers, insurers, relatives or acquaintances, governmental or law enforcement authorities, marketers or any other third parties.”

The internet's ease of use as a research tool and the vast amount of information it offers has attracted many social scientists. Researchers may decide against disclosure of their presence on the internet, which raises issues around deception. The capacity to assume anonymous or pseudonymous identities is available to researchers and participants, which can confuse distinctions between reality and cyberspace. The sense of privacy that can be felt through the internet may be more illusion than reality. The internet also poses challenges with respect to informed consent processes, not least because researchers cannot easily verify age, mental capacity, and characteristics relevant to sampling. There is controversy about the expectation of privacy on the internet. Some researchers argue it is a public space and offers no expectation of privacy, and others point out that many internet users regard their chat rooms as private personal spaces where like-minded people interact.