Implications of Mandatory Consent for Tissue Sample Use- Balancing Ethics and Scientific Progress

Implications of Mandatory Consent for Tissue Sample Use- Balancing Ethics and Scientific Progress

Research Ethics

Unethical actions were common in past research, as is the case with Henrietta Lacks, a woman who succumbed to cancer in 1951 (Skloot, 2000). Her cancerous cells, HeLa cells, became and still are a significant part of biomedical research today. However, the actions of the scientists in collecting and researching the HeLa cells question research ethics.

Repercussions If Scientists Were Required to Inform and Get Consent

I think there would be numerous repercussions if scientists were required to inform and get consent from potential subjects or donors involved in research. The repercussions of informing and getting consent from subjects and donors depend on the subject or donor. One repercussion would be scientific advancement when the subject or donor readily accepts to aid in the advancements. On the other hand, a subject or donor not willing to aid in scientific progress would hold back potential improvement, limiting the good that would have been yielded to the public. However, despite this argument, I believe people involved in research should have a say in whether they want to be involved in aiding scientific advancements.

The potential ethical breach in the medical care that Henrietta Lacks received

There was an ethical breach in the medical care Henrietta Lacks received at the time because of the overlooking of medical confidentiality. Her case was spread throughout the scientific fields, and her cells were shared without disclosure and consent. However, researchers obtaining her cells was no ethical breach due to the lack of research ethics. Due to the absence of research ethics, the incident was handled as the scientists saw fit back.

If this happened today:

If Henrietta’s incident happened today, there would be great repercussions for Henrietta and her family, including breaking patient confidentiality, mental and psychological damages, privacy invasion, and mistrust of scientific communities who misled and deceived Henrietta and her family. Ethical consequences for the Lacks family regard the disclosure of HeLa cell use and commercialization of scientific procedures utilizing HeLa cells.

Other examples of research ethics include social media platforms, where individuals provide their details for data collection. These include digital health platforms such as telehealth (Facca et al., 2020) and dating sites. To handle this situation, platform owners should ensure that users’ privacy is maintained and that they are informed of all probable scenarios involving their data.

References

Facca, D., Smith, M., Shelley, J., Lizotte, D., & Donelle, L. (2020). Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review. PLOS ONE, 15(8), e0237875. https://doi.org/10.1371/journal.pone.0237875

Skloot, R. (2000). Johns Hopkins Magazine — April 2000. Pages.jh.edu. Retrieved 10 February 2022, from https://pages.jh.edu/~jhumag/0400web/01.html.

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ACTIVITY INSTRUCTIONS
First, let’s start with a question based on your opinion. Consider this:

“Most Americans have their tissue on file somewhere. In 1999 the RAND Corporation published a report that more than 307 million tissue samples from more than 178 million people were stored in the United States. This number, the report said, was increasing by more than 20 million samples each year. These samples come from routine medical tests, operations, clinical trials and research donations.” (See the New York Times article)
• What do you think the repercussions would be if scientists were required to inform and get consent? Would restricting this impede scientific advancements and perhaps harm the public good?

Implications of Mandatory Consent for Tissue Sample Use- Balancing Ethics and Scientific Progress

After reading and viewing the materials on Henrietta Lacks, answer the following questions:
• At the time of the incident (prior to the Belmont Report), was there an ethical breach in the medical care that Henrietta Lacks received?
• Was there an ethical breach by the researchers who received Henrietta Lacks cells?
If this happened today:
• What kind of “harm” may have been done to Henrietta or her family by the researchers (intentionally or unintentionally)?
• Is there an ethical consequence for the Lacks family that we should be concerned about?
• Identify other examples, beyond those in the video, of how data is being collected and used and the potential ethical standards that may be violated. How do you recommend that these situations be handled?