How often have we heard the phrase, “be careful what you put on the internet because you can’t take it back”?
Whether it be on social media, chat rooms or various websites, this has been especially important during the job interview process as many companies have started screening potential candidate’s internet presence to see if they would be a good fit for the company. Quite recently, we have seen in the news many stories of individuals who lost their jobs due to comments they made online that did not align with the company values.
What if the information you put on the internet could also be used in clinical research?
The internet has grown as a source for research data, and many questions have been raised as to where data can originate without needing IRB review or the person’s consent. Per the Common Rule, data can be identifiable private information as long as it has been made publicly available.
What is considered a “public” internet space as opposed to “private?”
As noted by compliance consulting firm Advarra, there are three categories for consideration:
- Online information that is available without any need to join or log into the platform and does not require a special feature, such as Twitter
- Online information that is available after joining or logging into the platform and does not require a special feature, such as Facebook
- Online information that is only available after joining or logging into the platform and does require a special feature, such as a support group
The first category can easily be determined as public internet space and the third category as private internet space; however, the second category is not so easily defined. As a best practice, when using online information from a source that would fit in the second category, study information should be provided to an IRB for review before considering the information as research data.
Which ethical guidelines should be followed when conducting online research?
There are not many guidelines available to help researchers navigate the use of the internet as a source for data, and there is a good amount of gray area to determine what can and cannot be used.
An independent case study was performed utilizing online, medicine-purchasing web forums to determine if common ethical principles (informed consent, anonymity, and public/private) could be applied to internet research. The study included the following design:
- Public/Private - The chosen web forums fell under the first category listed above as they did not require registration to access the posts and content; however, they did require membership to post or comment. As the information posted was public, this study did not require consent from the participants or IRB review.
- Informed Consent - The researcher posted in the forums and explained that they were a researcher using and requesting the information people added to the forum. This was intended to make the participants aware of the research as well as to provide an opportunity for them to decline the use of their information. This was not required per the Common Rule.
- Anonymity - All identifying information was removed prior to publication.
When following these ethical principles, the research was met with many challenges. As the definition for public vs. private from Advarra was somewhat vague, the research had to inquire with each individual forum whether the information was available for research purposes. When the researcher posted in the forum to identify themselves, they were met with hostility from participants. Based on these reactions, the researcher switched their approach to only observe the forum, which went against the original ethical intention. Finally, anonymity was difficult to ensure as digital data can be traced.
The overall conclusions from the case study were that greater understanding is needed to understand public/private online distinctions, updated guidance and procedures were needed to help navigate online research, and informed consent in the context of online research was not possible and also not necessary.
Based on what you know about public/private internet platforms and the case study discussed above, do you think it is possible to conduct online research ethically? Or is it not necessary as it is universally understood that anything posted on the internet could be made public?
Lisa Sugiura, Rosemary Wiles. “Ethical Challenges in Online Research: Public/Private Perceptions – Lisa Sugiura, Rosemary Wiles, Catherine Pope, 2017.” SAGE Journals, 1 Jan. 2009, journals.sagepub.com/doi/full/10.1177/1747016116650720#articleCitationDownloadContainer.
Gelinas, Luke. “Differentiating ‘Public’ and ‘Private’ Internet Spaces in IRB Review.” Advarra, 29 Apr. 2020, www.advarra.com/public-v-private/.
U.S. Department of Health and Human Services, Food and Drug Administration. (2018). 45 CFR 46.104[i] https://www.ecfr.gov/cgi-bin/retrieveECFR?gp=&SID=83cd09e1c0f5c6937cd9d7513160fc3f&pitd=20180719&n=pt45.1.46&r=PART&ty=HTML.