Post-mortem privacy is a person's ability to control the dissemination of personal information after death. An individual's reputation and dignity after death is also subject to post-mortem privacy protections. In the US, no federal laws specifically extend post-mortem privacy protection. At the state level, privacy laws pertaining to the deceased vary significantly, but in general do not extend any clear rights of privacy beyond property rights. The relative lack of acknowledgment of post-mortem privacy rights has sparked controversy, as rapid technological advancements have resulted in increased amounts of personal information stored and shared online.
Law
European Union
Neither primary law of the European Union, including the Charter of Fundamental Rights of the European Union, nor secondary legislation, most notably Regulation (EU) 2016/679 (General Data Protection Regulation), provides for the protection of privacy and personal data post-mortem. Similarly, the European Convention on Human Rights, as well as the jurisprudence of both the Court of Justice of the European Union and the European Court of Human Rights, do not recognize or establish a right to data protection for deceased individuals within the legal framework of the European Union. Hamuľák, Ondrej; Kocharyan, Hovsep; Kerikmäe, Tanel. The Contemporary Issues of Post-Mortem Personal Data Protection in the EU after GDPR entering into Force. Czech Yearbook of Public and Private International Law. 2020. pp 225-238. Available at: https://rozkotova.cld.bz/CYIL-vol-11-2020/224/
United States
Under common law, the right to privacy is considered a personal right, meaning it applies only to the living and, consequently, does not recognize the privacy interests of the deceased. Because of this, defamation and privacy torts that are used to prevent unjust damage to individuals' reputations cannot be extended post-mortem.Banta, Natalie M. 2016. "Death and privacy in the digital age." North Carolina Law Review, 3: 958. Retrieved October 12, 2017 (InfoTrac LegalTrac, EBSCOhost). For example, a family cannot file suit for invasion of privacy on behalf of a deceased relative as a personal right; it can only be exerted by the person whose rights are being infringed upon. In addition, the deceased do not qualify for privacy protections held in constitutional and statutory rights, such as those noted in the Fourth and Fourteenth Amendments. Judicial justification for the termination of privacy rights at death is centered on two main points: firstly, the deceased can no longer be active agents, and secondly, the deceased are incapable of being harmed by invasion of privacy or defamation.Buitelaar, J. 2017. [null “Post-mortem privacy and informational self-determination.”] Ethics & Information Technology, 19(2):129. The only clear extension of postmortem privacy rights under federal law are those pertaining to property. Via Will, private property and some personal information can be passed on to heirs in accordance with the decedent's wishes.
Most post-mortem privacy protection occurs on the state level. Thus, legislation and the degree of protection varies widely from state to state.
Relevant court cases
Jesse James Jr. v. Screen Gems Inc. established that rights of privacy do not survive death. The widow of Jesse James Jr. filed suit against Screen Gems on behalf of her late husband, claiming the use of his name in a documentary was an invasion of his privacy. The court decided her claim was insufficient because it only applied to her husband.Fennimore, Keenan C. 2012. "Reconciling California's Pre, Post, and Per Mortem Rights of Publicity." Indiana International & Comparative Law Review 22(2): 377-409.
Medical confidentiality
Medical confidentiality is upheld through both state and federal law. Because state legislation varies considerably, Congress passed explicit medical privacy regulations in 2000 under the Health Insurance Portability and Accountability Act (HIPAA),Berg, Jessica W. 2001. "Grave secrets: legal and ethical analysis of postmortem confidentiality.” Connecticut Law Review, (1):81. which protects individual's personally identifiable health information for 50 years after death. Howeover, no legal mandate exists regarding patients' wishes after death. During life, informed consent is the basis for managing patient medical history, but since informed consent is no longer possible post-mortem, confidential medical information is at risk of being exploited in a number of ways. First, highly sensitive information, such as genetic information, potential health factors, or diseases, can be easily disseminated in a way the patient may not have wanted. In addition, legal consent for research on a patient's biological material no longer applies to deceased individuals, allowing such research to be conducted on deceased patients without requiring permission.Moore, Quianta L., Mary A. Majumder, Lindsey K.Rutherford, et al. 2016. [null "Ethical and Legal Challenges] Associated with Public Molecular Autopsies." Journal of Law, Medicine & Ethics, 44(2): 309-318.
The dissemination of autopsy records has become a significant issue in recent years. State legislation dictating the dissemination of autopsy records can be characterized into three groups: those prioritizing confidentiality, those prioritizing complete transparency, and a middle ground that limits some aspects of disclosure for privacy protection. The inconsistencies surrounding this legislation also have the potential to expose very personal medical information that can also affect the living relatives of a patient. For example, certain genetic diseases that the patient's family does not want known to the public could be exposed, which can lead to raising health insurance premiums and employment difficulties.
In England and Wales, and under the European Convention of Human Rights, medical confidentiality survives the death of the patient.Kohl, U.(2022) What post-mortem privacy may teach us about privacy, Computer Law & Security Review, Vol 47, 105737, https://doi.org/10.1016/j.clsr.2022.105737 .
Case of Henrietta Lacks Henrietta Lacks was an African-American woman whose cells were removed without consent while receiving cancer treatment. Her cells became the source of the foundational HeLa cell line in the scientific world today.Jones, D. Gareth. "Genetic privacy and the use of archival human material in genetic studies - current perspectives." Medicolegal & Bioethics, 5:43-52. Lacks and her family were neither informed nor asked for consent to the use of her cells for this research. It was not until the 1980s when Lacks's medical records were made public, exposing the rest of her family's medical information as well as the fact that her family was never informed of this. The major issue surrounding the Lacks case is twofold. Firstly, at no point was consent sought for the extraction and research on Lacks's cells. Secondly, her family never received compensation for the commercial use of the HeLa cell line.
Medical research The lack of biobank policies and consent forms has led to uncertainty about the post-mortem use of data for medical research. However, studies show that acceptability of post-mortem use of data for medical research was high among research participants and their relatives.
Autopsy and death scene photographs Under the Due Process Clause, family members generally maintain the right to control dissemination of photos of deceased relatives. Privacy rights in this context only extend to the privacy of the living relatives of the decedent, not the actual deceased.Siddiqui, Mahira. 2014. [null “Narrowly Restricting “clearly Established” Civil Liberties: The ConstitutionalRamifications of a Family Member’s [under]protected Federal Privacy Rights in the Dissemination of Postmortem Images in Marsh v. County of San Diego.”] Golden Gate University Law Review, 44(1): 81-99. Most court rulings regarding autopsy and death scene photos have looked to the precedent set by the federal Freedom of Information Act (FOIA), which determines under which circumstances the release of such images is appropriate and not invasive of any living person's privacy.Terilli, Samuel A., and Sigman L. Splichal. 2005. "[null Public Access to Autopsy and Death-scene Photographs: Relational Privacy, Public Records and Avoidable Collisions."] Communication Law & Policy, 10(3): 313-348.
Case of Emmett Till While most families wish to conceal the images of their deceased loved ones, Mamie Till Bradley, mother of Emmett Till, decided to make the photos of her brutally murdered son public in spite of officials' attempts to ignore the event.Harold, Christine, and Kevin Michael DeLuca. [null "Behold the Corpse: Violent Images and the Case of] Emmett Till." Rhetoric and Public Affairs, 8(2): 263-86. The photos exposed the horrendous realities of racial injustice in America and became a rallying call for many influential civil rights figures, including Martin Luther King Jr. and Muhammad Ali. Moreover, the images forced all Americans to confront the deep-rooted racism in America despite many white Americans’ attempts to remain ignorant to the despicable happenings, especially in the South.
Relevant court cases In New York Times Company v. NASA, the D.C. District Court denied the New York Times request under the Freedom of Information Act (FOIA) for access to audio recordings of the astronauts involved in the Challenger explosion moments before the event. The major argument of the case came down to weighing public interest and the decedents' families, and the court ruled in favor of protecting the decedents' families, claiming that exposing the tapes could cause relatives of the astronauts trauma.
National Archives and Records Administration v. Favish similarly found that under FOIA, the privacy rights of a decedents' relatives are both acknowledged and prioritized when disseminating autopsy/death scene photos of the deceased. This decision was made in regards to the death scene photos of Vincent Foster, a deputy counsel to Bill Clinton.
Marsh v. County of San Diego determined that a prosecutor who photocopied and then released an autopsy photo of a deceased child after his retirement could not be sued under the Doctrine of Qualified Immunity. A major point in the case was whether or not Brenda Marsh had the legal right to control the dissemination of her son's autopsy photos, and though the court determined that she did, it ruled on a technicality that at the time of the events, the law had not yet been "clearly established."
Digital assets