How digital researchers can ensure protection of human subjects

There are 3 fundamental principles for conducting human-subject research that were established in the Belmont Report to ensure guidelines for basic ethical principles, as well as informed consent, the assessment of risks and benefits, and subject selection.  The 3 principles are:

  1. Respect for persons – individuals should be treated as autonomous agents/persons with diminished autonomy are entitled to protection
  2. Beneficence – benefits should be maximized and harm should be minimized for human subjects
  3. Justice –  no person should be taken advantage of for research — fair treatment is central

These principles set up an excellent foundation for researchers to adhere to. Luckily IRBs serve as a way to protect human subjects, however, researchers have the power to do more to ensure that human subjects aren’t being mistreated and/or being taken advantage of. As Marie Wallace mentioned in The Ethics of Collecting Data Ted Talk, data can be used either as a way to exploit or manipulate individuals, or it can be used as a way to enrich our lives. So often in the digital age, the data and privacy of individuals are breached with little to no control given to human subjects.  According to Wallace, there is no one solution for privacy and different scenarios require different approaches. However, one overarching theme that can be applied to address the protection of human subjects is TRANSPARENCY. In the digital age, transparency is everything — it can break or build trust between individuals and researchers. Digital users need to understand how their data is being used, what benefits or burdens are presented to them, and ultimately how they may disengage from the digital sphere if their data is being misused. In other words, the power needs to go back into the hands of the human subjects to ensure that they are empowered and respected. In the long run, when researchers, companies, and social media are transparent with human subjects, it builds trust, respect, and open communication on both sides. This is the way to maximize the protection of individuals in the digital world. Ethical digital research puts an emphasis on discovery through research while at the same time respecting the privacy and needs of the research subjects. Although IRB measures may protect human subjects from being taken advantage of, it seems that the IRB process may be outdated. It takes into account traditional forms of research but there is much more room needed for safety measures in the digital sphere. Just as human subjects have the right to be protected in traditional research, it’s crucial that they are protected in the digital environment.

 

3 Comments

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  1. Hi Sana,
    I loved how you brought up the transparency aspect addressed in the Marie Wallace TED talk video. As I watched her TED talk, there were so many connections to be made between her TED talk and the Netflix documentary “The Social Dilemma”. I definitely think that documentary could create more conversation around how we as digital researchers can ensure the protection of human subjects because if we as researchers understand the whole picture of the situation of the digital world and social media as seen throughout the documentary, we can create more and more solutions within the research space. I wholeheartedly agree with your comment regarding the power transferring back into the human subjects’ hands because it helps to ensure that not only are they empowered and respected, but aspects such as confidentiality and privacy of the research participant can also be ensured.

  2. I really appreciated the element of transparency in the TED talk and agree that it’s fundamental! I framed it a little differently in my post, but I think transparency is ultimately what I was aiming for! Trust is so monumental in the research process and exploiting that trust is unethical at the very least.

  3. I too think transparency is crucial. However, I don’t think the Ted Talk adequately provides a nuanced look at what transparency actually means. Does transparency mean accountability? Does it also mean that whatever we are doing “in broad day light” conforms to being ethical? Great commentary!

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