Why Facebook Is Not Subject to Irb Research Review
Guest post by Dr. Graciela Gonzalez-Hernandez, associate professor of computer science at the Perelman Schoolhouse of Medicine, University of Pennsylvania.
Social media has grown in popularity for health-related research equally it has get evident that information technology can be a good source of patient insights. Exist information technology Twitter, Reddit, Instagram, Facebook, Amazon reviews or health forums, researchers accept nerveless and processed user comments and published endless papers on different uses of social media data.
Using these information tin exist a perfectly adequate enquiry practice, provided they are used ethically and the research approach is solid. I will non discuss solid scientific principles and statistically audio methods for social media data utilize here, though. Instead, I will focus on the much-debated ethical principles that should guide observational studies washed with social media information.
To assist frame our discussion, allow'due south consider why the ideals of social media data use is called into question. Almost invariably when I nowadays my work in this area or submit a proposal or paper, someone raises the question of ethics, frequently despite my efforts to address it upfront. I believe this reticence or discomfort comes from the idea that the data can be traced back to specific people and the fear that using the data could consequence in harm. Some research with social media data might seem innocuous plenty. One might think no harm could possibly come from making available the collected information or specific tweets on topics like smoking cessation and the strategies people find effective or not. But consider data focusing on topics such every bit illegal substance use, addiction recovery, mental wellness, prescription medication abuse, or pregnancy. Black and white tin rapidly turn to gray.
Before going further, it is important to understand the fundamental rules for this type of research in an academic setting. In general, researchers who desire to use social media information apply to their institutional review board (IRB) for review. Research activities involving man subjects and express to one or more than of the exempt categories defined by federal regulations receive an "exempt determination" rather than "IRB approval." In the example of social media data, the exemption for existing information, documents, records, and specimens detailed in 45 CFR 46.101(b)(4) more often than not applies, equally long equally y'all don't contact individual users equally function of the research protocol and the data to be studied are openly and publicly available. If you will be contacting individual users, the study becomes more like a clinical trial, needing "informed consent" and total IRB review. (See the National Institutes of Health's published guidelines for this case.)
Furthermore, exempt studies are and so named because they are exempt from some of the federal regulations that apply to homo-subjects research. They are non exempt from state laws, institutional policies, or the requirements for upstanding enquiry. Most of all, they are not exempt from evidently old common sense.
Only when information technology comes to the existing-data exemption, which information are "openly and publicly bachelor" is open to question. To be condom, use merely data available to all users of the platform without whatever actress permissions or approvals. No data from closed forums or groups that would require 1 to "join" within the platform should be considered "openly and publicly available." After all, members of such groups more often than not expect their discussions are "individual," fifty-fifty if the group is big.
Beyond that, when deciding how to employ the data or whether to publish the data directly, ask yourself whether revealing the information in a context other than where it was originally posted could outcome in harm to the people who posted information technology, either now or later. For example, yous could include specific social media posts as examples in a scientific newspaper, only, if the topic was delicate, you might choose not to publish a mail service verbatim, instead changing the wording and then a search of the host platform would non lead someone to the user. In the example of platforms like Reddit that are congenital around anonymity, this linguistic communication modification would not exist necessary. If possible, use aggregate data (e.g., counts or topics discussed) rather than individual social media posts.
However you arroyo your inquiry, datasets used for automatic language processing experiments demand to exist shared for the results to exist reproducible. Which format this takes depends on the data source, but reproducibility does not take a dorsum seat just because these are social media data. To help you lot further consider the question of how to apply or share these data, bank check out the guidelines published by the Clan of Cyberspace Researchers. These guidelines include a comprehensive gear up of practical questions to help you lot decide on an ethical approach, and I highly recommend them. In their report of the ethics of social media apply, Moreno et al. also address some practical considerations and offering a good summary of the bug.
We are now prepare to consider what constitutes ethical research. Ethics, or principles of right comport, apply to institutions that conduct research, whether in academia or industry. Although ethics is sometimes used interchangeably with morals, what constitutes upstanding behavior is less subjective and less personal, defining correct beliefs within a relatively narrow expanse of activeness. While there will probable never be a generally agreed upon code of ethics for every surface area of scientific activity, a number of groups accept established principles relevant to social media-based enquiry, including the American Public Wellness Association, the American Medical Information science Association, and the previously mentioned Clan of Internet Researchers. Principles of research ethics and ethical treatment of persons focus around the policy of "do no harm," merely it falls to IRBs to decide if harm could issue from your approach and whether your proposed enquiry is ethical. Even so, however, review boards might have discrepant opinions, as recent work looking into attitudes toward the utilize of social media data for health enquiry has shown.
So where does that go out those of usa looking to conduct health research using social media data?
Have a "stop and recall" and "when in doubt, ask" approach before finalizing a study and investing time. Help ensure the researcher'southward interests are counterbalanced against those of the people involved (i.eastward., the users who posted the data) by putting yourself in their shoes. Exist cognizant of the needs and concerns of vulnerable communities who might require greater protection, but don't assume that research involving social media data should not exist done or that the data cannot be shared. If the research was ethically conducted, then social media data can and should be shared every bit office of the scientific process to ensure reproducibility, and in that location is a lot that can exist gained from pursuing it.
Graciela Gonzalez-Hernandez, MS, PhD, is a recognized proficient and leader in natural language processing applied to bioinformatics, medical/clinical informatics, and public health informatics. She is an associate professor with tenure at the Perelman Schoolhouse of Medicine, University of Pennsylvania, where she leads the Health Language Processing Lab within the Institute for Biomedical Informatics and the Section of Biostatistics, Epidemiology, and Information science.
Source: https://nlmdirector.nlm.nih.gov/2019/06/25/on-the-ethics-of-using-social-media-data-for-health-research/
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