Ideas and Opinions
Annals of Internal Medicine
Corporate Research Ethics: Whose Responsibility? Jeremy R. Simon, MD, PhD
T
he recent publication of a study conducted by Facebook, which manipulated the amount of positive or negative material that users saw in their Facebook newsfeeds, has provoked much critical comment (1). The goal was to see whether the emotional content of users’ newsfeeds affected their emotional states, as measured by their posts (2). The study involved approximately 700 000 Facebook users (2), none of whom were asked to consent (3). Most published discussion has been about Facebook’s manipulation of users without their permission. Facebook’s position, stated in the paper, is that no specific consent was needed because the terms of service to which users agree when registering for Facebook allow it to do this research (2). This assertion is dubious—Facebook’s terms of service at the time of the study stated that it could employ data from its users for various purposes but do not mention intentional manipulation of information provided to users in ways that are not directly helpful to them (3). Facebook’s behavior is certainly open to criticism, and the paper’s lead author, who works at Facebook, has posted an apology (4). However, the role of the academic researchers and editors in publishing this study has received less scrutiny. The paper’s 2 coauthors were from Cornell University, and the paper was published in the Proceedings of the National Academy of Sciences of the United States of America (PNAS). In accordance with standard research ethics, one would have expected both of these organizations to have mechanisms in place to prevent them from becoming involved in human subjects research done without informed consent. Indeed, both Cornell and the PNAS have policies against such involvement. Cornell, under its Federalwide Assurance, has voluntarily pledged to adhere to the Federal Policy for the Protection of Human Subjects (“the Common Rule”), the Belmont Report, the Declaration of Helsinki, and the Nuremberg Code for all of its human subjects research (5). Each of these guidelines requires informed consent from research participants (6, 7). This self-imposed obligation seems to bar Cornell from participating in this study and its institutional review board from approving it. The PNAS likewise acknowledges its responsibility to protect research participants. It accepts the Declaration of Helsinki’s recommendation that “[r]eports of research not in accordance with the principles of this Declaration should not be accepted for publication” (6) and tells prospective authors that “experiments [involving human subjects] must have been conducted according to the principles expressed in the Declaration of Helsinki” (8). As noted, the Declaration of Helsinki requires informed consent for human subjects research. Thus, by its own stan-
dards, the PNAS should not have published the paper. Yet, this research, done on human subjects without their consent, was published, with academic coauthors. Each party has released an explanation. Cornell says that “because the research was conducted independently by Facebook and Professor Hancock had access only to results—and not to any individual, identifiable data,” it was not, as far as Cornell’s involvement was concerned, human subjects research and thus did not warrant oversight (9). The PNAS published an “editorial expression of concern” after the storm broke. While acknowledging that failure to obtain consent was concerning, it explained that adherence to the Common Rule was PNAS policy, but as a private company Facebook was not subject to the Common Rule and the Common Rule does not bar use of data gathered outside its purview, even without consent. It therefore published the paper (10). Although these explanations may be technically adequate, both are ethically beside the point. In essence they say, “Facebook isn’t bound by the rules, and, anyway, the data were already gathered by the time we got involved.” Both parts of this defense are problematic. Although Facebook is, indeed, not bound by the Common Rule, this is an artifact of our regulatory structure, not a reasoned ethical decision. The principles of the Declaration of Helsinki, Nuremberg Code, and Belmont Report do not apply only to participants in research being conducted by noncommercial entities. It is simply that no government agency has thought, or perhaps has the authority, to impose human subjects research regulations on Facebook. This does not mean that the participants in Facebook’s research are less deserving of protection than those in a drug trial. If Cornell and the PNAS realized that the study participants did not receive the usual protections—and their statements show that they did realize this—they were ethically obligated to protect the participants in any way still possible. Facebook’s exemption from regulation is unfortunate but irrelevant. What of the argument that, because the data were already gathered, Cornell and the PNAS could no longer protect the participants and so the data may as well be used? A refusal to participate or publish after the fact serves as a deterrent to future inappropriate research. Such a refusal might even have protected the participants of this study directly if it had dissuaded Facebook from carrying the study further. At any rate, a clear policy would have See also: Related article. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 855 Editorial comment. . . . . . . . . . . . . . . . . . . . . . . . . . 919 © 2014 American College of Physicians 917
Ideas and Opinions
Corporate Research Ethics
warned Facebook not to pursue this research in the first place, at least if it hoped to publish it. To make matters starker, it is inconceivable that Cornell or the PNAS would have accepted data from a drug study done in-house by a pharmaceutical company without the participants’ consent. Accepting data from Facebook is no different. Indeed, it may be worse. The only argument for using unethically acquired data is that they are highly valuable and cannot be obtained any other way. Some drug trials might meet this standard, but the Facebook data do not. The Facebook study shows a substantial gap in our protection of research participants, which can only grow as corporations gain more access to our lives and data. Ultimately, the solution needs to be societal, with legal protections extended to all study participants regardless of where the researcher works. However, until the law catches up to this reality, academic researchers and publishers—for whom human subjects protection is already routine—must take the lead by refusing to participate in this type of research and by working to ensure that protections are extended to all who should have them. From Columbia University, New York, New York. Disclosures: Authors have disclosed no conflicts of interest. Forms can
be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms .do?msNum⫽M14-1669. Requests for Single Reprints: Jeremy R. Simon, MD, PhD, Center for Bioethics, Columbia University, 630 West 168th Street, 3-470, New York, NY 10032; e-mail, [email protected].
918 16 December 2014 Annals of Internal Medicine Volume 161 • Number 12
Author contributions are available at www.annals.org. Ann Intern Med. 2014;161:917-918. doi:10.7326/M14-1669
References 1. Goel V. Facebook tinkers with users’ emotions in news feed experiment, stirring outcry. The New York Times. 30 June 2014:B1. Accessed at www.nytimes .com/2014/06/30/technology/facebook-tinkers-with-users-emotions-in-news -feed-experiment-stirring-outcry.html on 2 September 2014. 2. Kramer AD, Guillory JE, Hancock JT. Experimental evidence of massivescale emotional contagion through social networks. Proc Natl Acad Sci U S A. 2014;111:8788-90. [PMID: 24889601] doi:10.1073/pnas.1320040111 3. Goel V. Privacy group files complaint over Facebook’s emotion study. The New York Times. 4 July 2014:B2. Accessed at http://bits.blogs.nytimes.com /2014/07/03/privacy-group-complains-to-f-t-c-about-facebook-emotion-study on 2 September 2014. 4. Facebook post by Adam D.I. Kramer. 29 June 2014. Accessed at www .facebook.com/akramer/posts/10152987150867796 on 11 July 2014. 5. Cornell University. Cornell University Institutional Review Board for Human Participants. 6 June 1967 [Updated 14 March 2007]. Accessed at http://the universityfaculty.cornell.edu/governance/committees/institutional_review_board /IRBCharge.pdf on 2 September 2014. 6. World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310:2191-4. [PMID: 24141714] doi:10.1001/jama.2013.281053 7. Dunn CM, Chadwick GL. Protecting Study Volunteers in Research: A Manual for Investigative Sites. 2nd ed. Boston: CenterWatch; 2002. 8. Proceedings of the National Academy of Sciences of the United States of America. Editorial policies: journal policies. September 2014. Accessed at www .pnas.org/site/authors/journal.xhtml on 11 July 2014. 9. Carberry J. Media statement on Cornell University’s role in Facebook “emotional contagion” research [press release]. Ithaca, NY: Cornell Univ; 30 June 2014. Accessed at http://mediarelations.cornell.edu/2014/06/30/media-statement -on-cornell-universitys-role-in-facebook-emotional-contagion-research on 11 July 2014. 10. Verma IM. Editorial expression of concern: experimental evidence of massive-scale emotional contagion through social networks. Proc Natl Acad Sci U S A. 2014;111:10779. [PMID: 24994898] doi:10.1073/pnas.1412469111
www.annals.org
Annals of Internal Medicine Author Contributions: Conception and design: J.R. Simon.
Drafting of the article: J.R. Simon. Critical revision of the article for important intellectual content: J.R. Simon. Final approval of the article: J.R. Simon. Administrative, technical, or logistic support: J.R. Simon.
www.annals.org
16 December 2014 Annals of Internal Medicine Volume 161 • Number 12
Copyright © American College of Physicians 2014.
Annals of Internal Medicine
Corporate Research Ethics: Whose Responsibility? Jeremy R. Simon, MD, PhD
T
he recent publication of a study conducted by Facebook, which manipulated the amount of positive or negative material that users saw in their Facebook newsfeeds, has provoked much critical comment (1). The goal was to see whether the emotional content of users’ newsfeeds affected their emotional states, as measured by their posts (2). The study involved approximately 700 000 Facebook users (2), none of whom were asked to consent (3). Most published discussion has been about Facebook’s manipulation of users without their permission. Facebook’s position, stated in the paper, is that no specific consent was needed because the terms of service to which users agree when registering for Facebook allow it to do this research (2). This assertion is dubious—Facebook’s terms of service at the time of the study stated that it could employ data from its users for various purposes but do not mention intentional manipulation of information provided to users in ways that are not directly helpful to them (3). Facebook’s behavior is certainly open to criticism, and the paper’s lead author, who works at Facebook, has posted an apology (4). However, the role of the academic researchers and editors in publishing this study has received less scrutiny. The paper’s 2 coauthors were from Cornell University, and the paper was published in the Proceedings of the National Academy of Sciences of the United States of America (PNAS). In accordance with standard research ethics, one would have expected both of these organizations to have mechanisms in place to prevent them from becoming involved in human subjects research done without informed consent. Indeed, both Cornell and the PNAS have policies against such involvement. Cornell, under its Federalwide Assurance, has voluntarily pledged to adhere to the Federal Policy for the Protection of Human Subjects (“the Common Rule”), the Belmont Report, the Declaration of Helsinki, and the Nuremberg Code for all of its human subjects research (5). Each of these guidelines requires informed consent from research participants (6, 7). This self-imposed obligation seems to bar Cornell from participating in this study and its institutional review board from approving it. The PNAS likewise acknowledges its responsibility to protect research participants. It accepts the Declaration of Helsinki’s recommendation that “[r]eports of research not in accordance with the principles of this Declaration should not be accepted for publication” (6) and tells prospective authors that “experiments [involving human subjects] must have been conducted according to the principles expressed in the Declaration of Helsinki” (8). As noted, the Declaration of Helsinki requires informed consent for human subjects research. Thus, by its own stan-
dards, the PNAS should not have published the paper. Yet, this research, done on human subjects without their consent, was published, with academic coauthors. Each party has released an explanation. Cornell says that “because the research was conducted independently by Facebook and Professor Hancock had access only to results—and not to any individual, identifiable data,” it was not, as far as Cornell’s involvement was concerned, human subjects research and thus did not warrant oversight (9). The PNAS published an “editorial expression of concern” after the storm broke. While acknowledging that failure to obtain consent was concerning, it explained that adherence to the Common Rule was PNAS policy, but as a private company Facebook was not subject to the Common Rule and the Common Rule does not bar use of data gathered outside its purview, even without consent. It therefore published the paper (10). Although these explanations may be technically adequate, both are ethically beside the point. In essence they say, “Facebook isn’t bound by the rules, and, anyway, the data were already gathered by the time we got involved.” Both parts of this defense are problematic. Although Facebook is, indeed, not bound by the Common Rule, this is an artifact of our regulatory structure, not a reasoned ethical decision. The principles of the Declaration of Helsinki, Nuremberg Code, and Belmont Report do not apply only to participants in research being conducted by noncommercial entities. It is simply that no government agency has thought, or perhaps has the authority, to impose human subjects research regulations on Facebook. This does not mean that the participants in Facebook’s research are less deserving of protection than those in a drug trial. If Cornell and the PNAS realized that the study participants did not receive the usual protections—and their statements show that they did realize this—they were ethically obligated to protect the participants in any way still possible. Facebook’s exemption from regulation is unfortunate but irrelevant. What of the argument that, because the data were already gathered, Cornell and the PNAS could no longer protect the participants and so the data may as well be used? A refusal to participate or publish after the fact serves as a deterrent to future inappropriate research. Such a refusal might even have protected the participants of this study directly if it had dissuaded Facebook from carrying the study further. At any rate, a clear policy would have See also: Related article. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 855 Editorial comment. . . . . . . . . . . . . . . . . . . . . . . . . . 919 © 2014 American College of Physicians 917
Ideas and Opinions
Corporate Research Ethics
warned Facebook not to pursue this research in the first place, at least if it hoped to publish it. To make matters starker, it is inconceivable that Cornell or the PNAS would have accepted data from a drug study done in-house by a pharmaceutical company without the participants’ consent. Accepting data from Facebook is no different. Indeed, it may be worse. The only argument for using unethically acquired data is that they are highly valuable and cannot be obtained any other way. Some drug trials might meet this standard, but the Facebook data do not. The Facebook study shows a substantial gap in our protection of research participants, which can only grow as corporations gain more access to our lives and data. Ultimately, the solution needs to be societal, with legal protections extended to all study participants regardless of where the researcher works. However, until the law catches up to this reality, academic researchers and publishers—for whom human subjects protection is already routine—must take the lead by refusing to participate in this type of research and by working to ensure that protections are extended to all who should have them. From Columbia University, New York, New York. Disclosures: Authors have disclosed no conflicts of interest. Forms can
be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms .do?msNum⫽M14-1669. Requests for Single Reprints: Jeremy R. Simon, MD, PhD, Center for Bioethics, Columbia University, 630 West 168th Street, 3-470, New York, NY 10032; e-mail, [email protected].
918 16 December 2014 Annals of Internal Medicine Volume 161 • Number 12
Author contributions are available at www.annals.org. Ann Intern Med. 2014;161:917-918. doi:10.7326/M14-1669
References 1. Goel V. Facebook tinkers with users’ emotions in news feed experiment, stirring outcry. The New York Times. 30 June 2014:B1. Accessed at www.nytimes .com/2014/06/30/technology/facebook-tinkers-with-users-emotions-in-news -feed-experiment-stirring-outcry.html on 2 September 2014. 2. Kramer AD, Guillory JE, Hancock JT. Experimental evidence of massivescale emotional contagion through social networks. Proc Natl Acad Sci U S A. 2014;111:8788-90. [PMID: 24889601] doi:10.1073/pnas.1320040111 3. Goel V. Privacy group files complaint over Facebook’s emotion study. The New York Times. 4 July 2014:B2. Accessed at http://bits.blogs.nytimes.com /2014/07/03/privacy-group-complains-to-f-t-c-about-facebook-emotion-study on 2 September 2014. 4. Facebook post by Adam D.I. Kramer. 29 June 2014. Accessed at www .facebook.com/akramer/posts/10152987150867796 on 11 July 2014. 5. Cornell University. Cornell University Institutional Review Board for Human Participants. 6 June 1967 [Updated 14 March 2007]. Accessed at http://the universityfaculty.cornell.edu/governance/committees/institutional_review_board /IRBCharge.pdf on 2 September 2014. 6. World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310:2191-4. [PMID: 24141714] doi:10.1001/jama.2013.281053 7. Dunn CM, Chadwick GL. Protecting Study Volunteers in Research: A Manual for Investigative Sites. 2nd ed. Boston: CenterWatch; 2002. 8. Proceedings of the National Academy of Sciences of the United States of America. Editorial policies: journal policies. September 2014. Accessed at www .pnas.org/site/authors/journal.xhtml on 11 July 2014. 9. Carberry J. Media statement on Cornell University’s role in Facebook “emotional contagion” research [press release]. Ithaca, NY: Cornell Univ; 30 June 2014. Accessed at http://mediarelations.cornell.edu/2014/06/30/media-statement -on-cornell-universitys-role-in-facebook-emotional-contagion-research on 11 July 2014. 10. Verma IM. Editorial expression of concern: experimental evidence of massive-scale emotional contagion through social networks. Proc Natl Acad Sci U S A. 2014;111:10779. [PMID: 24994898] doi:10.1073/pnas.1412469111
www.annals.org
Annals of Internal Medicine Author Contributions: Conception and design: J.R. Simon.
Drafting of the article: J.R. Simon. Critical revision of the article for important intellectual content: J.R. Simon. Final approval of the article: J.R. Simon. Administrative, technical, or logistic support: J.R. Simon.
www.annals.org
16 December 2014 Annals of Internal Medicine Volume 161 • Number 12
Copyright © American College of Physicians 2014.
