New Methods in Human Subjects Research: Do We Need a New Ethics?
Online surveys and interviews, the observations of chat rooms or online games, data mining, knowledge discovery in databases (KDD), collecting biomarkers, employing biometrics, using RFID technology – even as implants in the human body – and other related processes all seem to be more promising, cheaper, faster, and comprehensive than conventional methods of human subjects research. But at the same time these new means of gathering information may pose powerful threats to privacy, autonomy, and informed consent. Online research, particularly involving children and minors but also other vulnerable groups such as ethnic or religious minorities, is in urgent need of an adequate research ethics that can provide reasonable and morally justified constraints for human subjects research. The paper at hand seeks to provide some clarification of these new means of information gathering and the challenges they present to moral concepts like privacy, autonomy, informed consent, beneficence, and justice. Some existing codes of conduct and ethical guidelines are examined to determine whether they provide answers to those challenges and/or whether they can be helpful in the development of principles and regulations governing human subjects research. Finally, some conclusions and recommendations are presented that can help in the task of formulating an adequate research ethics for human subjects research.
Keywords: Human Subjects Research, Online Research, Biomarkers, Biometrics, Autonomy, Privacy, Informed Consent, Research Ethics