Hello fellow readers! I’m Tiffany Woelfel, MSW a graduate student in Public Health at the University of Washington with 15 years of research experience across a variety of fields. I am also the owner of Innovata Research Consulting where I do many things, including provide social media advice to nonprofits, government and healthcare organizations.
I was surprised to learn that the federal regulations on privacy, autonomy, and confidentiality have not been updated to reflect the nuances of social media. There are no universal guidelines or best practices in regards to using information from people’s social media profiles like Facebook, Twitter, LinkedIn and YouTube.
Unfortunately, researchers recently collected data from what they thought was student’s public Facebook profiles and made the dataset publicly available. They thought it was fully “de-identified” only to find that this information was not publicly available and could be used easily to locate the student.
Lesson Learned: If you are going to take information from a public profile, make sure you are using a computer and a social media profile that does not share any settings (e.g. school, company, network, organization) as the profile of interest so you are truly seeing only what is accessible to the public.
Rad Resource: Check out the Facebook newsfeed study and the Facebook voting study. More and more, social media websites are working with advertisers to collect user information and to manipulate them without informed consent. Companies do not have the obligation to gain informed consent in the same way that academic and scientific researchers do. Further, how informed consent is defined online is still a slippery slope.
Lesson Learned: Do users consent to their data being used any way that social media sites see fit just because they have an active profile? Think about this and the implications of assuming they do before using their data. Brainstorm innovative ways to gain their consent that could increase rapport and still get their data because you never know when you may decide you need to go back and ask for more!
Rad Resource: Want more help? MIT researchers are hosting the first Conference On Digital Experimentation in October and Microsoft Research is currently developing a tool to help researchers ask consumers if they think a proposed project is ethical before it begins.
Hot Tip: I was reluctant to use social media for research purposes until I realized that not doing so would mean science would fall behind. It’s up to us to share our thoughts on this issue and have more dialogue with IRB reviewers. They are just as unsure as we are. This is a wonderful opportunity for the private and public sector to learn from one another and establish best practices across industries.
If you would like to learn more about this issue, stay tuned for my blog “Drugs, Data and Disturbia”, where I will talk about these topics, including my thesis research on IRB guidelines and social media research.
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