Devlin, C. Freedom From Unwarranted Experimentation
Devlin, Curt (2017) Freedom from Unwarranted Experimenta- tion. Open Journal of Social Sciences, 5, 23-48. https://doi.org/10.4236/jss.2017.55003
May 9, 2017
This is a declaration of the fundamental human right of all people, simply by virtue of being human, to be free from subjection to all forms of experimentation unless they voluntarily consent to participate after being fully informed of all risks by qualified experts in all relevant fields. Further, it asserts that everyone retains the right to opt out of any experiment, each of their own accord, and at any time, even after consent has been freely given and the experiment is underway. This paper argues for the urgent need to broadly expand the definition of human research in order to extend protections against illicit experimentation far beyond the boundaries of formal medical and scientific research; to recognize the full scope of ethical principles embodied in the Nuremberg Code of 1947; and, ultimately, to enact these protections into law. In support of these contentions, three primary examples have been chosen to illustrate recent and widespread violations of these fundamental rights. Examples have been chosen from social media, the tobacco industry, and wind energy production precisely because they fall well outside this boundary of formal human research as conventionally defined, and they demonstrate the need for wider protections in all walks of life, as a fundamental dictate of social justice.
All human beings have a fundamental and inalienable right to be free from subjection to any form of experimentation against their will, or without their knowledge. This right is closely related to, but distinctly different from the widely recognized right to health. Any experimental research or activity which puts a person’s health or wellbeing at the risk of harm without his or her fully informed consent and voluntary participation must be considered a violation of this right.
When any sustained experiment of any kind poses even the faintest possibility of harm to any person, he or she must be provided with all the relevant information necessary to make a fully informed decision to voluntarily participate or refuse. Even when a subject has been properly informed and agrees to participate, he or she retains the right to revoke consent and stop participating at any time during the course of the experiment. Experiments which are not designed to provide every legitimate means of egress for subjects without further unavoidable harm are also a violation of this right.
The Nuremberg Code forged in 1947 is among the first and perhaps most well-known efforts to articulate this ethical principle explicitly (“Tribunals”, 1949) . A circular published by the Weimar Government prior to the start of WWII, known as the “German Guidelines on Human Experimentation 1931” preceded the Nuremberg doctrine and espouses some of the same principles, but it notably lacks any recognition of the subject’s right to opt out (“Guidelines,” 1931) . Unlike these guidelines, the Nuremberg Code was written specifically as a tool for prosecuting crimes against humanity perpetrated by Nazi doctors and researchers during WWII. They had subjected concentration camp prisoners to horrific experiments that no one would ever consent to voluntarily.
To briefly summarize some of its most important provisions, the Nuremberg Code asserts that an ethical experiment on humans must:
- Obtain voluntary, informed consent of all subjects
- Allow subjects to leave if they choose
- Make every effort to minimize potential harm
- Be conducted by experts in the field
- Be stopped if injury, disability, or death becomes likely
Contrary to what one might hope, these provisions have been largely ignored outside the realms of science and medicine, and seldom enacted into law. Outside medical research, these principles have become “More honor’d in the breach than the observance” as Shakespeare so aptly put it (Branagh, 1996, Hamlet Act 1, scene 4, 7-16) .
What follows is a discussion of the Nuremberg Code in some its historical context to show why the protections for human subjects embodied in it must be treated as a fundamental human right and why it should be more broadly applied. This discussion draws upon some recent examples of illicit experimentation on human subjects outside of medical research; such as tobacco products and psychological experiments conducted on Facebook. It then focuses most specifically on the development of wind energy as a case study of widespread but hitherto unrecognized human experimentation. Finally, it attempts to call attention to some shortcomings of the Nuremberg Code and offers some suggested improvements in the hope of renewing interest in it and applying it across its proper breadth as a fundamental human right and principle of social justice.