You can be signed in via any or all of the methods shown below at the same time. Although there are no hard and fast rules for this sort of research, in failing to carry out informed consent procedures and restricting their ethical review to an internal process, Facebook did not follow these principles. However, there have also been significant issues brought to light in this study that show that there are problems with human research within big data companies, exemplified by the Facebook study, and particularly problems of informed consent, as discussed earlier in this article. A growing share of Americans say they will refuse to receive a coronavirus vaccine, which could greatly harm efforts to get the disease under control in the U.S. donate to ICAN DONATE BY MAIL. Please check you selected the correct society from the list and entered the user name and password you use to log in to your society website. 2025 Guadalupe Street, Suite 260; Austin, Texas 78705 The most prominent public spokespeople for those organizations are NVIC co-founder Barbara Loe Fisher, ICAN founder Del Bigtree, and CHD chair Robert F. Kennedy Jr. This theory requires successful communicators to be responsible in the truth-claims they make in order not to undermine the communication transaction and thus undermine the informed consent procedure. The waiver-based approach firmly states that this is not acceptable, because the required standard of communication dismisses full disclosure as an appropriate way to inform the user. Effective consent involves the aspects of autonomy (of the consent decision action), competence (of the person making the decision to consent), disclosure (of all of the risks, benefits, terms, conditions and any other limitation), understanding (on the part of the consenter of the former) and voluntariness (of the consenter to consent) (Faden and Beauchamp, 1986). This represents the tip of the iceberg; according to a recent report, anti-vaxxers have a combined Facebook following of 58 million people. Contact us if you experience any difficulty logging in. 05/26/20 9:16 AM EDT, Article Kennedy and Bigtree often appear together at public events, while ICAN’s website includes a link to Fisher’s group. This can avoid the ‘numbness’ that is associated with getting users to read, understand and accept the traditional terms of service and similar documents across multiple sites. As novel coronavirus cases spike in the U.S. and numerous efforts are underway to develop a vaccine, the most prominent U.S. anti-vaccination organizations are using Facebook and other social media platforms to poison the well against a potential vaccine -- even though the consequence of widespread vaccination rejection in the U.S. would be an additional public health disaster. Some of the main problems, as identified by ‘users or members’, reported online by the media (Hern, 2014; Hill, 2014; Meyer, 2014b; Waldman, 2014) and users in blogs and online polls (a particularly well curated set of responses was written by Deterding [2014a], and a poll conducted by The Guardian [Fishwick, 2014]), with the consent in this particular study can be broken down into these main issues: Users were not asked to participate in the experiment, and didn’t know they were participating in research; users did not know their news feeds were being manipulated by Facebook (although they were not surprised upon finding out); users were not made aware on signing up for the service that they could be potentially involved in any experiments while using Facebook; and. Informed Consent Action Network on Facebook and other social media platforms. ICAN maintains a Facebook page with more than 33,000 followers that is listed as a “charity” and “nonprofit” organization. I have focused on consent-related issues specifically, though there are other issues that are highly likely to be important to users of the system. If they do not waive the expected norm, then consent has not been given (as would be expected in cases such as a stabbing). However, this is not all that a successful communication transaction requires: in addition, the communication must not be dishonest, and needs to be accurate for the purpose. 2025 Guadalupe Street, Suite 260; Austin, Texas 78705 Among people who say they would not get a vaccine, seven in 10 cited safety concerns. Our policy is to ban ads containing vaccine misinformation.". Manuscript content on this site is licensed under Creative Commons Licenses, Informed consent, internet research ethics and Facebook, Informed consent and the Facebook emotional manipulation study, Association of Internet Researchers, 2012, http://www.mercurynews.com/business/ci_26077259/facebooks-sandberg-says-emotion-study-was-poorly-communicated, https://medium.com/message/what-does-the-facebook-experiment-teach-us-c858c08e287f, http://www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy-documents/research-guidelines-poli, http://mediarelations.cornell.edu/2014/06/30/media-statement-on-cornell-universitys-role-in-facebook-emotional-contagion-research/, http://codingconduct.tumblr.com/post/90242838320/frame-clashes-or-why-the-facebook-emotion-experiment, https://medium.com/@dingstweets/the-facebook-loophole-a39172e6496d, http://www.theguardian.com/technology/poll/2014/jun/30/facebook-secret-mood-experiment-social-network, http://psychcentral.com/blog/archives/2014/06/23/emotional-contagion-on-facebook-more-like-bad-research-methods/, http://www.theguardian.com/technology/2014/jul/01/facebook-data-policy-research-emotion-study, http://www.forbes.com/sites/kashmirhill/2014/06/28/facebook-manipulated-689003-users-emotions-for-science/, https://theconversation.com/facebook-puts-ethics-of-research-by-private-companies-in-spotlight-28798, http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=7002&blogid=140, https://www.facebook.com/akramer/posts/10152987150867796, http://www.theatlantic.com/technology/archive/2014/06/everything-we-know-about-facebooks-secret-mood-manipulation-experiment/373648/2/, https://newsroom.fb.com/news/2014/10/research-at-facebook/, http://www.responsible-industry.eu/dissemination/deliverables, http://about.brighton.ac.uk/hss/fregc/Ethical-internet.pdf, http://www.slate.com/articles/health_and_science/science/2014/06/facebook_unethical_experiment_it_made_news_feeds_happier_or_sadder_to_manipulate.html. NVIC has been posting content about the coronavirus that echoes falsehoods commonly seen in right-wing media coverage of the outbreak, including claims that seek to downplay the severity of COVID-19, the disease caused by coronavirus, and that suggest coronavirus deaths are being overreported. After Buzzfeed News identified anti-vaccine ads in January, a Facebook spokesperson paradoxically responded, “Facebook does not have a policy that bans advertising on the basis that it expresses opposition to vaccines. Fisher writes about the prospect of challenge trials -- in which participants are deliberately infected with a disease -- being used to assist in developing a vaccine. 3.Terms used were: ‘Facebook emotional manipulation study’, ‘Facebook study’, ‘Facebook emotions study’ (this last phrase suggested by Google News) and ‘Facebook news feed manipulation’. NVIC, CHD, and ICAN, are of course just the most prominent and well-funded anti-vaccination groups using social media platforms to attack coronavirus vaccine development. According to a 2010 study published in Health Psychology, “Accessing vaccine-critical websites for five to 10 minutes increases the perception of risk of vaccinating and decreases the perception of risk of omitting vaccinations as well as the intentions to vaccinate.” The phenomenon does not appear to work in reverse: A study that attempted to change attitudes with “direct pro-vaccination messages” found that those messages actually reinforced misguided beliefs. Informed Consent Action Network (ICAN) is suing the National Institutes of Health. During the interview, Kennedy alleged without evidence that past SARs outbreaks have been traced to accidents in labs developing vaccines and pushed numerous other right-wing coronavirus conspiracy theories. I identified that there is a significant gap between university-driven human research and industry-driven research in terms of research ethics, and that this is a problem which needs to be rectified. CHD and Kennedy have echoed right-wing conspiracy theories in attacking Microsoft CEO Bill Gates’ involvement in vaccine development. The responses from lay stakeholders were separated from responses from academics, which were used as a comparison mechanism. Informed consent should be made up of a series of waivers of expected behavioural and social norms. However, there were significant questions about the conduct of the experiment, focusing on the data manipulation and analysis methods used for identifying positive and negative posts (Grohol, 2014), the ethical conduct of the research, the burden of responsibility for this conduct, and the publication of the article by a peer-reviewed journal that requires IRB, REC or equivalent approval of such research. According to The HighWire, even the “biggest vaccine advocates in the country” are “sounding the alarm” on coronavirus vaccine development. Despite this, there are extensive guidelines for researchers available at various levels (universities [e.g. ICAN was founded by Del Bigtree, who is the host of an anti-vaccine and conspiracy theory online show called The HighWire. ... You consent … Name * First Last. Lean Library can solve it. ICAN is an anti-vaccine organization whose main focus is pushing the debunked claim that there is a link between vaccines and autism in children. Subsequent design decisions will need to be made carefully so that the option to not consent does not necessarily bar the user from using the site (though, depending on the consent request that was denied, perhaps puts them on a lower-scale bare bones version of the site). Informed consent is a concept that is traditionally associated with medical ethics. The e-mail addresses that you supply to use this service will not be used for any other purpose without your consent. The Informed Consent Action Network (ICAN) is one of the main anti-vaccination groups in the United States. Additionally, the COO of Facebook, Sheryl Sandberg, also apologized for the lack of communication (although she did not agree that the study was problematic in itself) (Bailey, 2014). In fact, common ways that anti-vaccine information is countered are typically ineffective. To do so the incentives to drive that acceptance must be found – this is one of the goals of the Responsible-Industry project. The groups' pages are rife with vaccine conspiracy theories and other coronavirus misinformation. donate to ICAN DONATE BY MAIL. The Informed Consent Action Network; EIN: 81-4540235, is Texas nonprofit with IRS Section 501(c) (3) taxexempt status. To state the obvious, the purpose of the vaccine trial is to determine how a vaccine may be safely administered. Facebook pages for NVIC, CHD, ICAN and their associated leaders and media projects have a combined more than 950,000 followers. Simply select your manager software from the list below and click on download. The debate over what constitutes public and private data, for example, is ongoing (British Psychological Society, 2013). Get FREE News & Updates! It is important at this point to note that there has been a response from a group of bioethicists stating that there was not any ‘egregious breach of ethics or law’ in the study (Meyer, 2014a) and that turning to regulation could drive such research ‘underground’: ‘If critics think that the manipulation of emotional content in this research is sufficiently concerning to merit regulation or charges of unethical behaviour, then the same concern must apply to Facebook’s standard practice — and many similar practices by companies, non-profit organizations and governments.’ As discussed earlier in this article, and as I have advocated for end-user licence agreements and privacy policies previously (Flick, 2013), it is absolutely the case that Facebook’s standard practice is also at issue, and that problematic informed consent procedures in the realm of technology need to be fixed in order to protect users and consumers of that technology. In internet research ethics, the following principle is of primary importance, according to the AoIR: ‘Because all digital information at some point involves individual persons, consideration of principles related to research on human subjects may be necessary even if it is not immediately apparent how and where persons are involved in the research data.’ (AoIR, 2012: 4). (In 2017, Kennedy claimed President Donald Trump asked him to chair a vaccine commission, but the plan appears to have not materialized.). Modern web development techniques allow Facebook to pin a notification to the top of the news feed or similar, or, as currently occurs when an unusual login is detected, offer a notification, until the user has acknowledged it in some way. Given the fraught conditions surrounding the effects of anti- and pro-vaccine messaging, one solution, of course, would be for social media platforms to root out and remove anti-vaccine misinformation rather than include a disclaimer or appeal to an authority that may actually reinforce anti-vaccine attitudes. Until that day, however, it would be prudent to maintain the ethical requirements and quality of human research science to reject research studies from any organizations, whether research or industry, where the data collection is not performed with ethical oversight (and if not independent ethical oversight, then at least procedures that would satisfy such oversight should it exist). Fisher also attacked vaccine development as a government tracking plot, said vaccine development could have “devastating consequences for humans,” and complained critics of public health officials will be “branded a threat to global health and can be censored on the internet, or far worse.” A June 11 NVIC Facebook post opposing coronavirus vaccine developments tells supporters, “We need to start developing personal relationships with the legislators and officials we elect, including our county sheriff, who can intervene on our behalf to protect us from tyranny.”, NVIC also uses its page to promote anti-vaccine information from other major anti-vaccine groups, such promoting anti-coronavirus vaccine material from Children’s Health Defense that argues “no ethical physician, parent, or politician should support their general use.”. The seminal form of informed consent that is appealed to in technology situations, effective consent, was described by Faden and Beachamp (1986) within the context of medical research ethics, but the theory has since moved beyond that field. The journal that published the article, the Proceedings of the National Academy of Sciences of the United States of America (PNAS), also requires any research with human participants to undergo ethical review. Such is the case in Facebook’s study – any information about what a user’s data might be used for is deep within the terms of service and data use policies, which are a long and complex read for most users (the terms of service running at over ten pages worth of text that is not often drawn to the attention of the user outside of initial sign-up, and which can be modified at any time). This is not an exhaustive review in any way, and ideally there would be direct engagement with the population to provide a fuller list of expectations that might potentially be violated. 2025 Guadalupe Street, Suite 260; Austin, Texas 78705 However, in a correction to the original article by PNAS Editor-in-Chief IM Verma, owing to the conclusion drawn by the Cornell University IRB the editors felt that it had been adequately screened, and that ‘as a private company Facebook was under no obligation to conform to the provisions of the Common Rule when it collected the data used by the authors’ (Kramer et al., 2014). 05/07/20 5:33 PM EDT, Article In fact, unlike many traditional research projects, where potentially interacting with the community could sway results, big-data projects such as Facebook can easily separate those participating in community engagement procedures and those to be involved in experimental research projects as subjects, if afraid of potential bias. This is important within the Facebook context because if the researchers had done this there may not have been the same backlash against the study as was demonstrated. In this article I have argued that the study conducted by Facebook and Cornell University researchers as described by Meyer (2014a) did not have adequate ethical oversight and did not perform informed consent procedures as required by internet research ethics, and that even if Facebook’s terms of service had had that users’ data could be used for research added to it, this would not have constituted valid informed consent. The emerging discourse around RRI might be able to provide pointers toward a framework for further discussion and research into how this might be achievable. The Informed Consent Action Network; EIN: 81-4540235, is Texas nonprofit with IRS Section 501(c) (3) taxexempt status. Find out about Lean Library here, If you have access to journal via a society or associations, read the instructions below. On May 28, NVIC shared a link to a video by QAnon conspiracy theorist and YouTuber “Amazing Polly” that bizarrely attempts to draw a connection between U.S. officials supposedly involved in the the 1998 Kenya embassy bombing and 9/11 “bombings” (a reference to 9/11 truther conspiracy theories) and coronavirus vaccine development.