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Ethics of Privacy in The Immortal Life of Henrietta Lacks

~6 min read 5 sections Ethics · Bioethics

Abstract

This paper examines the ethical dimensions of privacy violation as depicted in Rebecca Skloot's The Immortal Life of Henrietta Lacks. Drawing on two ethical frameworks — Gert et al.'s common morality and Kantian deontology — the paper evaluates whether the disclosure of Henrietta Lacks's medical records and her family's genetic information constituted an ethical breach. Under common morality, the analysis identifies violations of moral rules against causing pain, depriving freedom, and failing to obey the law. From a deontological perspective, privacy is framed as an inherent and inalienable right grounded in personal autonomy and human dignity. The paper concludes that although the privacy violations may not have been recognized as unethical at the time, they would clearly be deemed so by contemporary standards.

Key Takeaways

Introduction: Privacy as an Ethical Concern: Privacy violations in the Henrietta Lacks story introduced
Common Morality and the Moral Rules at Stake: Gert's common morality framework and ten moral rules defined
Applying Moral Rules to the Lacks Case: Specific moral rules analyzed against privacy violations
Deontological Ethics and the Right to Privacy: Kantian deontology frames privacy as inalienable right
Conclusion: Both frameworks synthesized; contemporary ethical judgment applied

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What makes this paper effective

Applies two distinct ethical frameworks systematically to the same case, allowing for a structured comparative analysis rather than a one-dimensional argument.
Grounds abstract ethical theory in a concrete, well-known case study, making philosophical concepts accessible and contextually relevant.
Acknowledges historical context — that the violations were not recognized as unethical at the time — which adds nuance and avoids anachronistic moral judgment.

Key academic technique demonstrated

The paper demonstrates framework-driven ethical analysis: each section introduces a theoretical lens (common morality, deontology), defines its key principles, and then applies those principles directly to the facts of the Henrietta Lacks case. This method of explicit theory-to-application mapping is a standard technique in applied ethics writing and ensures arguments remain anchored in recognized scholarly frameworks rather than personal opinion.

Structure breakdown

The paper opens with a brief introduction identifying privacy as the central ethical concern. Two body sections follow, each devoted to a distinct ethical framework: common morality (Gert et al.) and Kantian deontology. Within the common morality section, the paper first defines the framework and then analyzes specific moral rules violated in the Lacks case. The deontology section links privacy to autonomy and inherent human dignity. A concise conclusion synthesizes both frameworks. References follow APA style throughout.

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Essay 1,007 words

Introduction: Privacy as an Ethical Concern

Many ethical concerns arise in the story of Henrietta Lacks. Privacy is perceived as an ethical dilemma in the present day; however, at the time the events occurred, the actions involved may not have been widely recognized as unethical. Skloot (2010) discusses the unintentionally inconsiderate reporters and researchers who violated the family's privacy by printing and distributing everything from Henrietta's medical records to the genetic information of her family. Such disclosure raises serious ethical concerns by contemporary standards, as the sharing of patient information without consent is now strictly prohibited. The case of Henrietta Lacks has since become a landmark reference point in discussions of medical ethics, informed consent, and patient privacy.

Common Morality and the Moral Rules at Stake

According to Gert et al. (2000), a moral agent under common morality can be defined as an individual who fully understands what is demanded, prohibited, permitted, and affected by moral rules, and who can reasonably accept being guided and judged by those rules. Common morality is a public system comprising the moral justifications to which every individual is expected to conform. In particular, there are ten moral rules that are either demanded of or forbidden to moral agents. These rules represent the foundational components of common morality, employed through the formulation of norms that serve as guiding principles for all moral agents (Gert et al., 2000).

In the case of privacy violation — particularly with regard to the story of Henrietta Lacks — several of these moral rules appear to have been violated. These include: do not cause pain, do not deprive of freedom, obey the law, and do your duty. The concept of common morality provides a useful lens through which to evaluate each of these violations in turn.

Applying Moral Rules to the Lacks Case

These violations can be analyzed in depth. According to Gert (2004), rights such as the right to privacy serve to elucidate the moral rules. For instance, if one individual observes another and that person is upset by the action, the question becomes whether the first individual caused discomfort to the other. Importantly, this consideration does not hinge on strict causality, but rather on whether the first individual ought to be deemed as violating any of the moral rules — including the rule against causing pain. In the case of privacy violation in the story of Henrietta Lacks, the conclusion is that privacy was indeed violated, and this violation of an individual's right to privacy constitutes a violation of the rule prohibiting moral agents from causing pain (Gert, 2004).

Secondly, every individual possesses rights and freedoms. As ethics dictate, a person should exercise their own rights without infringing upon the rights of others. Henrietta and her family had the right to ensure that their personal information was not disclosed without their consent, as such disclosure directly violated their privacy. Unauthorized disclosure therefore amounts to a violation of the moral rule prohibiting the deprivation of freedom.

In addition, the journalists and reporters involved were, in one sense, fulfilling their professional duty. One of the moral rules in common morality is to do one's duty, and the duty of reporters is to gather and disseminate information to the public. However, adherence to this particular moral rule conflicted with other moral rules, as well as with the moral rule of obeying the law. At the time of the events, there was no explicit legal provision protecting the privacy of individuals in the manner that exists today. Nevertheless, in contemporary times, the law obligates respect for individual privacy. In this light, the reporters can be considered to have shown negligence by failing to adhere to that broader legal and moral standard (Gert, 2000). The evolution of medical privacy law since this period reflects how seriously these concerns are now taken.

1 Section Hidden · 130 words

Deontological Ethics and the Right to Privacy130 words

Deontology, as an ethical framework, emphasizes undertaking things that are right in themselves, rather than being deemed right because of their consequences. It institutes the moral act that acknowledges the rights of others…

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Conclusion

One of the key issues identified in the story of Henrietta Lacks is that of privacy. As explained by Skloot (2010), journalists printed and published Henrietta's medical records and her family's genetic information, thereby violating their privacy. At the time, this was not widely regarded as an unethical act — a judgment that would be rendered very differently by contemporary standards.

According to common morality, the privacy violations in the Henrietta Lacks case implicate several moral rules, including do not cause pain, do not deprive of freedom, obey the law, and do your duty (Gert, 2004). From a deontological perspective, privacy is an essential and inalienable right grounded in personal autonomy and human dignity (Bauer, 2009). Together, both frameworks affirm that the treatment of Henrietta Lacks and her family represents a significant ethical failing, regardless of the legal and cultural norms of the era.

References

Bauer, K. A. (2009). Privacy and confidentiality in the age of e-medicine. Journal of Health Care Law & Policy, 12, 47.

Gert, B. (2004). Deciding what to do. Oxford University Press.

Gert, B., Culver, C. M., & Clouser, K. D. (2000). Common morality versus specified principlism: Reply to Richardson. Journal of Medicine and Philosophy, 25(3), 308–322.

Skloot, R. (2010). The immortal life of Henrietta Lacks. Broadway Books.

The Business Scholar. (2014). Data privacy: A deontological perspective. Retrieved from http://the-business-scholar.blogspot.co.ke/2014/06/data-privacy-deontological-perspective.html

Key Concepts in This Paper

Privacy Rights Common Morality Deontological Ethics Moral Rules Patient Confidentiality Autonomy Henrietta Lacks Medical Disclosure Human Dignity Informed Consent