Bioethics in Biobank
Suebin Lee, Yui Araki

Navigating the complexities of collecting, storing, and sharing human biological samples

The first immortal human cell line — HeLA — discovered in 1951, was one of the most significant scientific breakthroughs of the previous century. Throughout the past few decades, this cell line has contributed to numerous medical advancements, from the study of cancer to the development of COVID-19 vaccines. 

However, this most used cell line in scientific research was in fact collected without consent. A little sample of Henrietta Lack’s tissue was extracted without her knowledge or agreement during her treatment at Johns Hopkins Hospital when she was diagnosed with cervical cancer. Dr. George Gey, a researcher at Johns Hopkins University who received this sample, discovered that these tumor cells can endlessly divide, providing researchers with an infinite supply of human cells to experiment with and ultimately expanding the biomedical research field. Despite the significance of the discovery of HeLa, her family was not made aware of their use until many years later, and similar issues surrounding consent still remain problems. 

Biobanks are a collection of biological samples (such as tissues and blood) and health information. Usually, clinical participation is accompanied by informed consent, which requires the researcher to explain the specifics of the research including its hazards to the participant before providing data, with a right to withdraw. However, this is inapplicable for biobanks because of their nature. 

Tissues include genetic information, so informed consent will not consider the consent of genetically connected individuals of a biobank sample. Confidentiality is also hard to keep, as genetics can be easily used to identify individuals. Additionally, as biobanking is the storage of tissue, the use of the sample in future research isn’t known at the time of extraction, and requesting consent for every future research is close to impossible. This makes informed consent invalid in biobanking, and brings a much harder ethical discussion to collect cooperation. People also worry about the use of their personal information and ownership of the sample, especially when detached bodily tissue is deemed no one’s property. These points make it hard for biobanking to be an ethical resource for research, despite its possibilities. 

The potential for biobanking is endless, and with real tissue and information that can be used for research, its applications for medical advancement could bring miracles. However, it requires a different level of understanding and consent from normal clinical practices. Therefore, until the ethical framework reaches a common ground, it’s technology that will keep on sparking debates. This leads us to the question: should advancement of science accompany the sacrifice of others?



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HS EXPLORER Monthly Updates

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Bioethics in Biobank
Suebin Lee, Yui Araki

Navigating the complexities of collecting, storing, and sharing human biological samples

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