Alya AlShakaki

Revisiting the Ethical Case of Henrietta Lacks from the Islamic Lens

Alya Al Shakaki

Weill Cornell Medicine - Qatar

aaa2017@qatar-med.cornell.edu

Henrietta Lacks, a Black American woman, was diagnosed with cervical cancer, and her tissue sample was taken and used in research without her knowledge or consent during treatment. The resulting "HeLa" cell line was discovered to possess unique, immortal properties that have significantly advanced research in cancer, immunology, and vaccine development, including efforts against COVID-19 (“Henrietta Lacks: Science Must Right a Historical Wrong,” 2020b). The ethical controversy surrounding the use of her cells without informed consent has been widely discussed in the bioethics community, especially following Rebecca Skloot's book The Immortal Life of Henrietta Lacks (Nisbet & Fahy, 2013b). If a case similar to Henrietta Lacks' occurred today, what policies and regulations in biomedical research govern informed consent? Additionally, what is Islam's stance on autonomy and informed consent? The current US policy for the Protection of Human Subjects, known as the ‘Common Rule,’ calls for informed consent and oversight through Institutional Review Board (IRB) for research conducted on human subjects when it is undertaken solely for research purposes. However, if a biospecimen is originally collected for clinical purposes and not intended for research, its secondary use for research does not require consent from the participant, provided that the individual's confidentiality is protected. This is achieved by ensuring no direct identifiers are available and replacing them with a code. The case of Lacks deviates from this standard, as she was identified, and her cells were named after her (Beskow, 2016). This correspondences with guidelines set forth by the Ministry of Public Health (MoPH) in Qatar for the use of stored data and biological specimens in human research (MoPH, 2019). The Islamic view aligns with the Council for International Organizations of Medical Sciences (CIOMS) guidelines, requiring investigators to obtain informed consent from research participants. This reflects the fiqh principle “No one is entitled to dispose of the rights of a human being without his permission” (Fadel, 2010). Moreover, the concept of autonomy and the doctor-patient relationship is deeply rooted in Islamic jurisprudence, which emphasizes that contractual agreements should be based on the consent of the involved parties—namely, the physician and the patient—who must be provided with sufficient information that is clear and free of uncertainty (gharar) (Ghaly, 2024). This was not the case with Henrietta Lacks, as she was not informed about the research conducted using her tissue samples.

BIOGRAPHY

Alya Al Shakaki is a Senior Clinical Research Coordinator at Weill Cornell Medicine – Qatar (WCM-Q) since 2010. She received her B.Pharm from Ajman University of Science and Technology in UAE in 2006, and M.A in Islamic Studies with a concentration in Islamic Thought and Applied Ethics at the College of Islamic Studies (CIS), Hamad Bin Khalifa University (HBKU) in 2019.

Alya co-authored multiple papers published in renowned journals in genomics. Her research interest is in the field of ethics and Islam in genomics. Connect with Alya on LinkedIn (https://www.linkedin.com/in/alya-al-shakaki-8042193b/).