Ethical Concerns of Social Media Health Research: Current Legislation and Protections

By Jacqueline Broush

Think of a time that you or someone you know has been accused of self-diagnosing based on something they saw or read online. Having access to information via healthcare websites, Google, or social media, can be beneficial to recognizing and learning about potential concerns.

However, misinformation exists online and particularly on social media. While official health organizations are integrating and forming a stronger online presence, legislation is attempting to keep up to prevent the spread of health-related misinformation. The most concerning target audience are children and how children’s online rights and privacy are recognized and implemented. As children continue to grow up in an increasingly technological world, they encounter misinformation that could be absorbed and incorrectly influence their lives.

As of 2024, 95% of teens ages 13 to 17 use social media, with a third of teens reporting they are on it “almost constantly”. Though most social media platforms require users to be a minimum age of 13, nearly 40% of children ages 8 to 12 have been reported to use social media (The Annie E. Casey Foundation). These children are at risk to early exposure of adult content, misinformation, and unknown media.

To combat these risks as social media becomes more advertised, states have attempted to create and implement new legislation to protect children and prevent misinformation. Thirty-five U.S. states and Puerto Rico addressed legislation in 2023, and only 12 states enacted bills or adopted potential solutions (Social Media). An example being Arkansas which enacted the Social Media Safety Act and the Distribution of Harmful Material Act. California also enacted a bill that requires media literacy to be included in school curriculum frameworks. Media literacy is the ability to appropriately analyze mass media for accuracy and credibility, which is an essential parameter to have as a media consumer.

Changing legislation has increased restrictions for children's ability to correctly use social media and hold platforms accountable. Each state has different social media and children/user privacy laws, making it difficult to form a universal moral code that helps everyone behave and interact with one another appropriately on social media.

The Health Misinformation Act of 2021 is a bill meant to hold social media platforms accountable for the spread of health misinformation, especially during declared public health emergencies. The bill limits these platforms from liable protection if they are spreading misinformation using the algorithm for promotion. Not only is health misinformation a concern in this landscape, but it is also harmful to children “being raised online”. We do not yet know the long-term effects of extensive exposure to social media.

It is another concern that people’s beliefs and desires are being led by the algorithm. This is where self-diagnosing has been a significant issue. This is where being educated in media literacy proves to be an asset for a media consumer. Many social media users fall victim to being led into falsely believing they currently have or are at risk of a mental or physical health diagnosis. The National Library of Medicine website states, “a key issue in considering observational research using social media is whether the proposed project meets the criteria as human subjects research” (Moreno). Access to additional information to check a social media sources credibility can sometimes be challenging; which could be because the credibility of that source is not strong.

The Library of Medicine continues, “observational research may also meet the criteria for exemption from the IRB review if the study involves observation of public information regarding individual human subjects” (Moreno). Consistently checking to see what public information regarding human subjects is essential in weighing factors of conducting independent health research.

An ethical and legally protected landscape of online health research is still developing. The country is meant to see major efforts made in legislation to regulate information regarding physical and mental health and wellness in 2025 (Fitzgerald). Though there should be more regulation to the type of information circulating on websites and social media, some lawmakers are skeptical that more restriction could weaken user privacy and lessen the flow of true information to online and social media users (Fitzgerald). However, legislation regulating, ensuring safety, and monitoring online information about public health must increase as personal online medical research rises.

Works Cited:

Fitzgerald, M. (2025, January 24). Social media experts are skeptical about the power of new State Laws • Stateline. Stateline. https://stateline.org/2025/01/24/social-media-experts-are-skeptical-about-the-power-of-new-state-laws/#:~:text=More%20measures%20are%20expected%20across,an%20age%20limit%20of%2018.

Moreno, M. A., Goniu, N., Moreno, P. S., & Diekema, D. (2013, September). Ethics of social media research: Common concerns and practical considerations. Cyberpsychology, behavior and social networking. https://pmc.ncbi.nlm.nih.gov/articles/PMC3942703/#s002

Social Media and children 2023 legislation. NCSL. (n.d.-b). https://www.ncsl.org/technology-and-communication/social-media-and-children-2023-legislation

The Annie E. Casey Foundation. (2023, August 10). Social media and Teen Mental Health. https://www.aecf.org/blog/social-medias-concerning-effect-on-teen-mental-health?gad_source=1&gad_campaignid=10228890624&gbraid=0AAAAAD3xzvG3w2RcybYuwlz-Q1jwhOjgU&gclid=CjwKCAjwruXBBhArEiwACBRtHU1f_CUAkLaNEzL-Lazx6PSM0GLHm3hN041OkA6R8QhTkRtdse3zEhoC9DcQAvD_BwE