Aden- Week 7

The lecture's discussion about ethics issues such as the Tuskegee Syphilis Study and the issue of using the cells of Henrietta Lacks demonstrate the shortcomings of the reactive nature of research ethical guidelines. During the trials and while rights were being violated, there was no recourse for the participants to protect themselves.

 The reactive nature of ethics guidelines is especially challenging in the internet age. It is encouraging that ethics issues are currently more visible and the research community is more aware of the need for guidelines. The Anabo et al. article from this week provides a good overview of some of the issues with establishing research ethics in the internet age. They mention that research ethics may not be prepared to protect participants in internet research. Many ethical guidelines are rooted in biomedical research (Anabo et al.). The same frameworks are being applied to internet social science research. Because of the differences between biomedical research and social science research, the current guidelines may not adequately protect internet research participants. The paper concludes with recommendations and opportunities for expanding ethical guidelines for internet research.

 I worry that without taking these recommendations seriously and because the internet evolves and changes so quickly, there will be violations of patients' rights in internet social science research. It is difficult to predict what these violations may look like, but the history of ethical guidelines indicates that prevention methods will be reactive rather than proactive. Swift and proper development of internet research guidelines such as those suggested by Anabo will be important to preventing future violations of participant rights.


Comments

  1. ErinaNovember 3, 2020 at 9:19 PM

    Hi Aden,

    I share the same concern as you. I do not think regulatory bodies and academia is doing enough to proactively account for ethical violations - something we've seen happen in history over and over again. An interesting conversation I had with a classmate in this course was about how she was investigating the role of cookies on webpages. Cookie notices are provided to users whenever they access a new page to alert them that they can change their cookie preferences. However, companies often place these notices so that users click accept rather than go through the hassle of selecting what they do and do not want to share. I think this example shows how website owners do not have a strong incentive to allow users to protect their information. Likewise, to some degree, I do not think researchers have a strong incentive to protect participant rights when it comes to collecting data from the internet (save for their conscience) since data provided online provides a wealth of study material.

    Erina

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  2. KaitlinNovember 4, 2020 at 5:30 AM

    Hi Aden, it's interesting you bring up this week's reading on Henrietta Lack's cells. I found it incredibly conflicting reading about the misguided ethical practices, because on one hand I do agree that the participants were unfairly treated, however I also recognize the incredible advances in medicine and cancer treatments that came about from HeLa cells. It reminds me of the ethical question, is the individual more or less important than the whole, and while I don't have an answer to this question, I feel that this example does illustrate the complexity of ethics.

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  3. AdenNovember 5, 2020 at 1:52 PM

    Hi Kaitlin,

    The Henrietta lacks issue is a good example of this question and an interesting test case. The Lacks family was not given notice of her cells being used. This was a clear violation of her rights. As a thought experiment, it would be interesting to ask what would happen if the Lacks family refused to allow her cells to be used despite the knowledge that it could save lives.

    I also do not know the answer to this question but I lean toward thinking that the collective good that the cells could do may outweigh the individual rights. This principle would have to be taken on a case by case basis. Weighing the common good that the cells could do against the seriousness of the rights violations could be a format for determining if the cells could be used.

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