The History of Science
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Human biospecimens play an important role in the scientific and medical world and they have significant contributions to past and current medical discoveries. However, there have been ethical concerns and debates raised about this topic particularly concerning the issues of informed consent. Informed consent can be described as a process that allows individuals used as biospecimens to make decisions voluntary in regards to whether to participate in given research or not after understanding the risks, benefits, procedure, and alternatives available (Tomlinson & Vries, 2019). The principle of informed consent comprises of respect for the individuals participating in the study, justice, and provisions of relevant information about the study that might affect the person involved (Daughton, 2013). Today, the medical world is indebted to Henrietta Lacks for her HeLa cells as they have made a significant contribution to various medical discoveries. However, Henrietta Lacks never gave consent about her cells being used for medical research nor did her family know about it long after she had died an issue that raises serious ethical concerns (Beskow, 2016). This discussion focuses on the story of Henrietta Lacks and the ethics around it especially in regards to the issue of informed consent.
In 1951, Henrietta Lacks, an African American woman of 30 years and mother to five children was diagnosed with an aggressive and unusual form of cervical cancer (Seitz, 2011). Tissues samples had been taken from her during the diagnosis and treatment process with some of these samples being handed over to researchers without her knowledge or consent which was a requirement at the time. Although Henrietta Lacks eventually succumbed to her condition, her tissue sample cells remain useful to date as they have been used in various laboratories globally to conduct different forms of medical research (Seitz, 2011). Also, the initial researchers didn’t hesitate to share the cells with anyone keen on them, leading to significant scientific discoveries. Unfortunately, the Lacks family did not know about it and received no financial benefit despite living in poverty with very limited access to healthcare.
Mrs. Lacks’s case highlights incidences where medical research has raised privacy issues and ethical concerns. The fact that the genome for HeLa cells is published in public medical databases affects Mrs. Lack’s privacy rights together with those of her family As such; this can be equated to a lack of respect to Mrs. Lacks and her family given the fact that for a long time this research was going on without their consent. Beskow (2016) argues that the fact that Mrs. Lack’s tissue cells led to key medical discoveries, some of which were even commercialized without the knowledge and consent of the family who also happened to be wallowing in poverty is very disrespectful.
The story of Henrietta Lacks has always attracted attention and generated public debate on various issues like informed consent, the welfare of the vulnerable in the community and compensation. As a consequence, this story became a catalyst for major policy changes within the United States in regards t informed consent affecting biospecimen research. For instance, initially, it may have been okay to take samples from Mrs. Lacks and use them to conduct medical research without violating any law but this is not the case anymore (Beskow, 2016). Today policy changes have been made requiring consent and privacy protection for people who have donated their tissue sample for nay medical research. As such, we can conclude that Henrietta Lack’s story has not only made significant contributions to scientific research in terms of new medical discoveries but also it has promoted policy changes that enhance consent, privacy, and ethics in scientific research.
References
Beskow, L. M. (2016). Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annual Review of Genomics and Human Genetics, 17(1), 395–417. doi: 10.1146/annurev-genom-083115-022536
Daughton, A. (2013). Lessons from Teaching Research Ethics Across the Disciplines. Ethics for Graduate Researchers, 241–254. doi: 10.1016/b978-0-12-416049-1.00015-5
Seitz, P. (2011). The Immortal Life of Henrietta Lacks. Curator: The Museum Journal, 54(4), 473–475. doi: 10.1111/j.2151-6952.2011.00112.x
Tomlinson, T., & Vries, R. G. D. (2019). Human Biospecimens Come from People. Ethics & Human Research, 41(2), 22–28. doi: 10.1002/eahr.500009
