The Medical and Legal Legacy of Henrietta Lacks

By: Chaitali Gandhi

In 1951, doctors at Johns Hopkins Hospital biopsied Henrietta Lacks, an impoverished African American patient with an unusually aggressive cervical tumor.[1] Some of the biospecimen was given to a medical researcher without Lacks’ knowledge and consent.[2] By utilizing this biospecimen, physicians developed the world’s first human cancer cell line. Prior to this development, scientists faced difficulty with their research because they lacked cells that reproduced infinitely in a lab. Dubbed HeLa cells, this immortal cell line helped with several groundbreaking medical developments in areas including polio, herpes, leukemia, influenza, hemophilia, Parkinson’s disease, cancer, AIDS, cloning, and in vitro fertilization. [3] Lacks died a few months after her biopsy, and despite forever changing medicine, her family did not learn about the HeLa cells for almost two decades. HeLa cells became extremely lucrative due to their unique properties; however, the Lacks family received no financial benefits.[4] Furthermore, while Henrietta’s cells saved lives and allowed major medical breakthroughs, the Lacks family suffered from chronic illnesses and could not afford proper health insurance. Thus, controversy of bioethics and informed consent has followed HeLa cells. [5]

Henrietta Lacks’ story became well known in 2010 with the release of The Immortal Life of Henrietta Lacks by Rebecca Skloot; the book rapidly became popular, and with it, so did the discussion of informed consent.[6] Informed consent is “a legal procedure to ensure that a patient or client knows all of the risks and costs involved in a treatment.”[7] Further, it affords the right to patients to accept or refuse treatment and reinforces the “legal and ethical right the patient has to direct what happens to her body.”[8] It is a concept that was developed alongside a code of ethics for research on human subjects due to the Nuremberg Code and World Medical Association’s Declaration of Helsinki in 1964.[9] Accordingly, the concept of informed consent was at its earliest stages during Henrietta Lacks’ time. It took over sixty years for the Lacks family to retain some rights over HeLa cells; in 2013, the National Institute of Health and Johns Hopkins agreed to allow the family to approve future use of the cells, but without financial gain.[10] Henrietta Lacks’ story signaled a turning point for patient rights.[11]

Currently, informed consent law serves to protect patients and their right to consent and be informed of recommended procedures and treatments and also limits professional liability.[12] The physician must discuss the diagnosis, purpose of the treatment or procedure, involved risks, alternative treatments, and risks or benefits of refusing the recommended treatment.[13]

One of three standards is generally used to determine that adequate information was provided to the patient. First, reasonable physician standard asks what the typical physician would say about the intervention.[14] This standard is considered inadequate since physicians show to tell their patients little information. Moreover, this standard focuses on the physician rather than the patient, which goes against the goals of informed consent. Second, reasonable patient standard asks what the typical patient needs to know to make an informed decision.[15] Third, the subjective standard asks what a particular patient needs to know to make an informed decision.[16] This is a difficult standard to practice because it is individualized for each patient. Most states have their own legislation or precedent to define their required standard.[17]

Although Henrietta Lacks’ legacy predominantly concerns medical breakthroughs, it also helped shape modern informed consent laws.

           
[1] Jennifer K. Wagner, Genomic Research Ethics: Special Rules for HeLa Cells, Genomics L. Rep. (Aug. 27, 2013), https://www.genomicslawreport.com/wp-content/plugins/as-pdf/generate.php?post=13104.

[2] Laura M. Beskow, Lessons from HeLa Cells: The Ethics and Policy of Biospecimens, 17 Ann. Rev. of Genomics and Hum. Genetics 395, 396 (2016).

[3] Gloria L. Blackwell, Remembering Henrietta Lacks, the Woman behind HeLa Cells, AAUW (Feb. 16, 2012), http://www.aauw.org/2012/02/16/the-woman-behind-hela-cells.

[4] Beskow, supra note 2.

[5] Importance of HeLa Cells, Access Science, https://www.accessscience.com/content/importance-of-hela-cells/BR0826141 (last updated 2014).

[6] Beskow, supra note 2.

[7] Informed Consent, The Immortal Life of Henrietta Lacks, http://fyb.umd.edu/2011/informed.html (last visited Aug. 30, 2017).

[8] Jessica De Bord, Informed Consent, U. of Wash. Sch. of Med., https://depts.washington.edu/bioethx/topics/consent.html (last modified Mar. 7, 2014).

[9] Julia K. Mavromatis, HeLa, HIPAA and the Ethics of Informed Consent, ACP Internist, http://blog.acpinternist.org/2011/05/hela-hipaa-and-ethics-of-informed.html (May 12, 2011, 11:00 AM).

[10] Laura Kolaczkowski, Henrietta Lacks’ Legacy of Informed Consent, Multiple Sclerosis News Today (July 5, 2016), https://multiplesclerosisnewstoday.com/blog/2016/07/6/henrietta-lacks-legacy-of-informed-consent. (ly 5, 20

[11] Ethics of Informed Consent and the Legacy of Henrietta Lacks, Rabin Martin, http://rabinmartin.com/insight/ethics-of-informed-consent-and-the-legacy-of-henrietta-lacks (last visited Aug. 17, 2017).

[12] Informed Consent Law, HG.org Legal Resources, https://www.hg.org/informed-consent-law.html (last visited Aug. 31, 2017).

[13] Id. 

[14] Id.

[15] Id.

[16] Id.

[17] Id.

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