In 2012, hundreds of thousands of Facebook users were subjected to human experimentation without consent. Researchers manipulated users’ news feeds to see how they would react to positive or negative news streams. Users were unaware of the emotional manipulation to which they were subjected. Facebook has defended their action by pointing out a small snippet in there TOS Agreement referring to “research”. Most users probably understood this to mean passive research such as data mining.
The Helsinki Declaration on human research defines the parameters for human research. Vague generalized references to “research”, such as those in the FaceBook terms of service, are completely inadequate for informed consent.
The infliction of emotional discord on a human being for research purposes without informed consent is a violation of the Declaration, as is the lack of ethics committee oversight.
This is S.O.P. for human research. Its very strict. The paper should never have been accepted for publication in a scientific journal.
Note the following items from the Declaration, especially 23, 26, and 35:
7. Medical research is subject to ethical standards that promote and ensure respect for all human subjects and protect their health and rights.
8. While the primary purpose of medical research is to generate new knowledge, this goal can never take precedence over the rights and interests of individual research subjects.
9. It is the duty of physicians who are involved in medical research to protect the life, health, dignity, integrity, right to self-determination, privacy, and confidentiality of personal information of research subjects. The responsibility for the protection of research subjects must always rest with the physician or other health care professionals and never with the research subjects, even though they have given consent.
10. Physicians must consider the ethical, legal and regulatory norms and standards for research involving human subjects in their own countries as well as applicable international norms and standards. No national or international ethical, legal or regulatory requirement should reduce or eliminate any of the protections for research subjects set forth in this Declaration.
23. The research protocol must be submitted for consideration, comment, guidance and approval to the concerned research ethics committee before the study begins. This committee must be transparent in its functioning, must be independent of the researcher, the sponsor and any other undue influence and must be duly qualified. It must take into consideration the laws and regulations of the country or countries in which the research is to be performed as well as applicable international norms and standards but these must not be allowed to reduce or eliminate any of the protections for research subjects set forth in this Declaration.
The committee must have the right to monitor ongoing studies. The researcher must provide monitoring information to the committee, especially information about any serious adverse events. No amendment to the protocol may be made without consideration and approval by the committee. After the end of the study, the researchers must submit a final report to the committee containing a summary of the study’s findings and conclusions.
26. In medical research involving human subjects capable of giving informed consent, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail, post-study provisions and any other relevant aspects of the study. The potential subject must be informed of the right to refuse to participate in the study or to withdraw consent to participate at any time without reprisal. Special attention should be given to the specific information needs of individual potential subjects as well as to the methods used to deliver the information.
After ensuring that the potential subject has understood the information, the physician or another appropriately qualified individual must then seek the potential subject’s freely-given informed consent, preferably in writing. If the consent cannot be expressed in writing, the non-written consent must be formally documented and witnessed.
All medical research subjects should be given the option of being informed about the general outcome and results of the study.
35. Every research study involving human subjects must be registered in a publicly accessible database before recruitment of the first subject.
This is a gross human rights violation and the responsible parties should be prosecuted to the fullest extent of the law for illicit human experimentation.Tweet