Post-mortem privacy

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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. [1] 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. [2] [3]

Contents

Law

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. [2] 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. [2] 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. [2] [4] 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. [5]

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), [3] which protects individual's personally identifiable health information for 50 years after death. [3] 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. [6]

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. [6] 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. [7]

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. [8] 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. [8] 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. [9]

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. [10] 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. [10] [11]

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. [12] 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. [12]

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. [11]

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. [11]

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." [10]

Digital assets

The past decade has seen an unprecedented amount of data being stored in online accounts. Because of the relative newness of this phenomenon, no legal mandate exists for how a person's digital assets are to be handled after death. Terms of Service Agreements between the user and the service provider remain the closest variant to this available. [2] In order to maintain their users' privacy protection, many of these agreements make it very difficult for third parties to access such online accounts once the user has died. Yahoo!, for example, states in its terms of service agreement that the account will be permanently deleted upon the user's death. [13] Google requires a lengthy process that involves getting a court order to obtain content from a deceased user's account. There is also an option to allow someone to manage the account, make it inactive, or delete it altogether once the user has died. [14] Facebook has allowed for the memorialization of deceased users' accounts, which aims to maintain the privacy of the user while allowing friends and family to still interact with the account. Requesting information from the account is a long and difficult process. The company also allows for "legacy contact," wherein the user can appoint someone to take over their account once they die. [15] The new policy also offers the option for the account to be permanently deleted upon death. [14]

The rigid policies of service providers have become increasingly problematic as online transactions and data storage have become more popular, and personal representatives have consequently found an increasing need to access online accounts in order to carry out estate transfers and Will orders. States began proposing legislation to address this problem in the early 2000s, and legislation favoring access to decedents' accounts became overwhelmingly supported. Delaware's Access to Digital Assets Act is an example of such legislation already passed at the state level, which grants family members of deceased individuals full access to online accounts and profiles. [16] However, stringent terms of service agreements by service providers still make access to accounts very difficult in most cases. Thus, two major contemporary legislative proposals have come forth to address the issue. In July 2014, the Uniform Law Commission (ULC) proposed the Uniform Fiduciary Access to Digital Assets Act (UFADAA) to provide fiduciaries easy access to the digital accounts of their deceased clients. Twenty-six states proposed legislation based on the UFADAA; however, such legislation failed in all but one state. [13] In response to this, NetChoice, a major rival to ULC, proposed the Privacy Expectation Afterlife Choices Act (PEAC), which included much more stringent guidelines for giving fiduciaries access to digital accounts and was overall considered to be much more privacy-centric. Only four states had proposed PEAC legislation in 2014, and only Virginia actually implemented it in 2015. [13] Shortly after passing the UFADAA, the ULC passed a revised version (RUFADAA). This new legislative proposal incorporated more privacy centered aspects that aligned more with those of PEAC, which even gained it the support of NetChoice. Moreover, thirty-one states proposed legislation in accordance with the RUFADAA. However, critics of the new legislation contest that its transformation still not does give much consideration to a decedent's post-mortem privacy of the information kept in their account. [13] Google announced in 2020 that they will delete photos and cloud files after two years of inactivity. [17]

Celebrity images and persona

Post-mortem publicity rights

The right of publicity was created as an extension of the right of privacy. It was developed with the intent to provided unique privacy rights to celebrities or anyone whose persona or name had commercial value. [18] Because these people are constantly in the public eye, general rights of privacy are oftentimes not applicable, thus publicity rights accommodate this situation. The right of publicity essentially grants a person the right to control the portrayal of themselves in the public eye, specifically in regard to commercial use. [18] Copyright laws, aimed at protecting the ownership rights of original works, contain a significant amount of overlap with publicity rights. Much like post-mortem privacy rights, no blatant federal rights of publicity have been established, leaving recognition up to individual states. Whether states have laws regarding post-mortem publicity is dependent upon whether the state classifies the right as a privacy right or a property right. If classified as a personal right, states will not recognize post-mortem rights of publicity due to the stipulation that personal rights only apply to the living. If classified as a property right, then the upkeep and transfer of publicity rights follow a similar tract as that of property. [5] [19] Most states acknowledge a specific duration for post-mortem publicity rights, which generally range between forty and one hundred years. [20] Because post-mortem publicity rights vary from state to state, court precedent has determined that when establishing a person's post-mortem publicity rights, the legislation of the state in which the decedent lived must be adhered to. [18]

Relevant court cases

Haelan Laboratories, Inc. v. Topps Chewing Gum, Inc. established the right of publicity, granting individuals control of the commercial use of their identity. [5]

Shaw Family Archives Ltd. v. CMG Worldwide, Inc. determined that Marilyn Monroe's estate did not own her post-mortem right of publicity because neither state of her residency, New York nor California, recognized post-mortem rights of publicity. [18]

In Experience Hendrix v. HendrixLicensing.com, Al Hendrix, despite being his son's sole heir, was denied the acquisition of Jimi Hendrix's publicity rights due to the fact that New York, at the time, did not acknowledge post-mortem publicity rights. [19]

Controversy

The use of deceased celebrities' likenesses has sparked controversy, mainly regarding the potential for their image to be used in a way that is inconsistent with that celebrity's desire. This can occur through the use of a celebrity's image for advertising a product, service, or any other recreation of celebrity likeness for commercial, or noncommercial, use in a way that the celebrity would otherwise not agree to during their lifetime. [21] This then raises questions about a potential violation of that celebrity's privacy because of the use of an individual's image without their consent. This can be seen in the 2012 Coachella concert, which featured a digital recreation of Tupac Shakur. The virtual clone performed on stage, rapping a song never recorded by Tupac during his life. [21] The use of such digital cloning and other similar recreations of celebrities could become a serious privacy concern in that those being reproduced have no control over how they are being represented. Discretion regarding the use of such digital personas is entirely up to whoever owns the right to that celebrity's image, which inevitably opens up the possibility that the decedent's interest is not being prioritized. [21]

Related Research Articles

<span class="mw-page-title-main">Privacy</span> Seclusion from unwanted attention

Privacy is the ability of an individual or group to seclude themselves or information about themselves, and thereby express themselves selectively.

The Uniform Anatomical Gift Act (UAGA), and its periodic revisions, is one of the Uniform Acts drafted by the National Conference of Commissioners on Uniform State Laws (NCCUSL), also known as the Uniform Law Commission (ULC), in the United States with the intention of harmonizing state laws between the states.

Personality rights, sometimes referred to as the right of publicity, are rights for an individual to control the commercial use of their identity, such as name, image, likeness, or other unequivocal identifiers. They are generally considered as property rights, rather than personal rights, and so the validity of personality rights of publicity may survive the death of the individual to varying degrees, depending on the jurisdiction.

<span class="mw-page-title-main">Autopsy</span> Medical examination of a corpse

An autopsy is a surgical procedure that consists of a thorough examination of a corpse by dissection to determine the cause, mode, and manner of death; or the exam may be performed to evaluate any disease or injury that may be present for research or educational purposes. The term necropsy is generally used for non-human animals.

Medical privacy, or health privacy, is the practice of maintaining the security and confidentiality of patient records. It involves both the conversational discretion of health care providers and the security of medical records. The terms can also refer to the physical privacy of patients from other patients and providers while in a medical facility, and to modesty in medical settings. Modern concerns include the degree of disclosure to insurance companies, employers, and other third parties. The advent of electronic medical records (EMR) and patient care management systems (PCMS) have raised new concerns about privacy, balanced with efforts to reduce duplication of services and medical errors.

<span class="mw-page-title-main">Probate</span> Proving of a will

In common law jurisdictions, probate is the judicial process whereby a will is "proved" in a court of law and accepted as a valid public document that is the true last testament of the deceased; or whereby, in the absence of a legal will, the estate is settled according to the laws of intestacy that apply in the state where the deceased resided at the time of their death.

<span class="mw-page-title-main">Privacy laws of the United States</span>

Privacy laws of the United States deal with several different legal concepts. One is the invasion of privacy, a tort based in common law allowing an aggrieved party to bring a lawsuit against an individual who unlawfully intrudes into their private affairs, discloses their private information, publicizes them in a false light, or appropriates their name for personal gain.

Information privacy, data privacy or data protection laws provide a legal framework on how to obtain, use and store data of natural persons. The various laws around the world describe the rights of natural persons to control who is using its data. This includes usually the right to get details on which data is stored, for what purpose and to request the deletion in case the purpose is not given anymore.

Privacy law is a set of regulations that govern the collection, storage, and utilization of personal information from healthcare, governments, companies, public or private entities, or individuals.

The Celebrities Rights Act or Celebrity Rights Act was passed in California in 1985, which enabled a celebrity's personality rights to survive their death. Previously, the 1979 Lugosi v. Universal Pictures decision by the California Supreme Court held that Bela Lugosi's personality rights could not pass to his heirs, as a copyright would have. The court ruled that any rights of publicity, and rights to his image, terminated with Lugosi's death.

Information technology law, also known as information, communication and technology law or cyberlaw, concerns the juridical regulation of information technology, its possibilities and the consequences of its use, including computing, software coding, artificial intelligence, the internet and virtual worlds. The ICT field of law comprises elements of various branches of law, originating under various acts or statutes of parliaments, the common and continental law and international law. Some important areas it covers are information and data, communication, and information technology, both software and hardware and technical communications technology, including coding and protocols.

Digital inheritance is the passing down of digital assets to designated beneficiaries after a person’s death as part of the estate of the deceased. The process includes understanding what digital assets exist and navigating the rights for heirs to access and use those digital assets after a person has died.

The Unified Victim Identification System (UVIS) is an Internet-enabled database system developed for the Office of Chief Medical Examiner of the City of New York (OCME) in the aftermath of the September 11 attacks on New York City and the crash of American Airlines Flight 587. It is intended to handle critical fatality management functions made necessary by a major disaster. UVIS is a strong flexible role-based application and permissions can be controlled dynamically.

A recent extension to the cultural relationship with death is the increasing number of people who die having created a large amount of digital content, such as social media profiles, that will remain after death. This may result in concern and confusion, because of automated features of dormant accounts, uncertainty of the deceased's preferences that profiles be deleted or left as a memorial, and whether information that may violate the deceased's privacy should be made accessible to family.

Do Not Track legislation protects Internet users' right to choose whether or not they want to be tracked by third-party websites. It has been called the online version of "Do Not Call". This type of legislation is supported by privacy advocates and opposed by advertisers and services that use tracking information to personalize web content. Do Not Track (DNT) is a formerly official HTTP header field, designed to allow internet users to opt-out of tracking by websites—which includes the collection of data regarding a user's activity across multiple distinct contexts, and the retention, use, or sharing of that data outside its context. Efforts to standardize Do Not Track by the World Wide Web Consortium did not reach their goal and ended in September 2018 due to insufficient deployment and support.

<span class="mw-page-title-main">General Data Protection Regulation</span> EU regulation on the processing of personal data

The General Data Protection Regulation, abbreviated GDPR, or French RGPD is a European Union regulation on information privacy in the European Union (EU) and the European Economic Area (EEA). The GDPR is an important component of EU privacy law and human rights law, in particular Article 8(1) of the Charter of Fundamental Rights of the European Union. It also governs the transfer of personal data outside the EU and EEA. The GDPR's goals are to enhance individuals' control and rights over their personal information and to simplify the regulations for international business. It supersedes the Data Protection Directive 95/46/EC and, among other things, simplifies the terminology.

Privacy in education refers to the broad area of ideologies, practices, and legislation that involve the privacy rights of individuals in the education system. Concepts that are commonly associated with privacy in education include the expectation of privacy, the Family Educational Rights and Privacy Act (FERPA), the Fourth Amendment, and the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Most privacy in education concerns relate to the protection of student data and the privacy of medical records. Many scholars are engaging in an academic discussion that covers the scope of students’ privacy rights, from student in K-12 and even higher education, and the management of student data in an age of rapid access and dissemination of information.

Privacy and the United States government consists of enacted legislation, funding of regulatory agencies, enforcement of court precedents, creation of congressional committees, evaluation of judicial decisions, and implementation of executive orders in response to major court cases and technological change. Because the United States government is composed of three distinct branches governed by both the separation of powers and checks and balances, the change in privacy practice can be separated relative to the actions performed by the three branches.

Celebrity privacy refers to the right of celebrities and public figures, largely entertainers, athletes or politicians, to withhold the information they are unwilling to disclose. This term often pertains explicitly to personal information, which includes addresses and family members, among other data for personal identification. Different from the privacy of the general public, 'Celebrity Privacy' is considered as "controlled publicity," challenged by the press and the fans. In addition, Paparazzi make commercial use of their private data.

Digital cloning is an emerging technology, that involves deep-learning algorithms, which allows one to manipulate currently existing audio, photos, and videos that are hyper-realistic. One of the impacts of such technology is that hyper-realistic videos and photos makes it difficult for the human eye to distinguish what is real and what is fake. Furthermore, with various companies making such technologies available to the public, they can bring various benefits as well as potential legal and ethical concerns.

References

  1. ↑ Buitelaar, J. C. (2017-06-01). "Post-mortem privacy and informational self-determination" (PDF). Ethics and Information Technology. 19 (2): 129–142. doi: 10.1007/s10676-017-9421-9 . ISSN   1388-1957.
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  3. 1 2 3 Berg, Jessica W. 2001. "Grave secrets: legal and ethical analysis of postmortem confidentiality.” Connecticut Law Review, (1):81.
  4. ↑ Buitelaar, J. 2017. [null “Post-mortem privacy and informational self-determination.”] Ethics & InformationTechnology, 19(2):129.
  5. 1 2 3 Fennimore, Keenan C. 2012. "Reconciling California's Pre, Post, and Per Mortem Rights of Publicity." Indiana International & Comparative Law Review 22(2): 377-409.
  6. 1 2 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.
  7. ↑ 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 Archived 2023-02-15 at the Wayback Machine .
  8. 1 2 Jones, D. Gareth. "[null Genetic privacy and the use of archival human material in genetic studies - current] perspectives." Medicolegal & Bioethics, 5:43-52.
  9. ↑ Bak, Marieke A. R.; Ploem, M. Corrette; Ateşyürek, Hakan; Blom, Marieke T.; Tan, Hanno L.; Willems, Dick L. (April 2020). "Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review". European Journal of Human Genetics. 28 (4): 403–416. doi:10.1038/s41431-019-0503-5. ISSN   1476-5438. PMC   7080773 . PMID   31527854.
  10. 1 2 3 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.
  11. 1 2 3 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.
  12. 1 2 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.
  13. 1 2 3 4 Lopez, Alberto B. 2016. "Posthumous Privacy, Decedent Intent, and Post-Mortem Access to Digital Assets." George Mason Law Review, 24(1): 183.
  14. 1 2 Barwick, Elizabeth D. "All Blogs go to Heaven: Preserving Valuable Digital Assets Without the Uniform Fiduciary Access to Digital Assets Act's Removal of Third Party Privacy Protections." Georgia Law Review 50, (2): 593-624.
  15. ↑ "What happens to my Facebook account if I pass away | Facebook Help Center". www.facebook.com. Archived from the original on 2022-10-30. Retrieved 2022-10-30.
  16. ↑ Gaied, Melissa. 2016. [null "Data after death: an examination into heirs' access to a decedent's private online] account." Suffolk University Law Review, 2: 281. Retrieved October 12, 2017 (InfoTrac LegalTrac, EBSCOhost).
  17. ↑ Morse, Jack (November 12, 2020). "Google says it 'may' delete your files if you don't log in enough". Mashable. Archived from the original on February 13, 2023. Retrieved February 15, 2023.
  18. 1 2 3 4 Decker, Michael. 2009. [null "Goodbye, Norma Jean: Marilyn Monroe and the Right of Publicity's] Transformation at Death." Cardozo Arts & Entertainment Law Journal, 27(1): 243.
  19. 1 2 Hicks, Aubrie. 2012[null "The right to publicity after death: post mortem personality rights in Washington in] the wake [null of Experience Hendrix v. HendrixLicensing.com]." Seattle University Law Review, (1): 275.
  20. ↑ Smolensky, Kirsten Rabe. 2009. "Rights of the Dead." Hofstra Law Review, 37(3): 763-804.
  21. 1 2 3 Smith, Shannon Flynn1. 2013. "If it Looks Like Tupac, Walks Like Tupac, and Raps Like Tupac, it's Probably Tupac: Virtual Cloning and Postmortem Right-of-Publicity Implications." Michigan State Law Review , (5): 1719-1761.
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