Post-mortem privacy and informational self-determination

Buitelaar, J.C.

doi:10.1007/s10676-017-9421-9

Cited by 30 publications

(14 citation statements)

References 21 publications

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“…In our analysis of empirical studies we found a complete lack of research regarding health-related data outside of genetics, probably because these implications of postmortem use are most obvious in relation to genetic relatives. However, the focus on genetic data obscures the question whether research participants should have post-mortem informational self-determination as such, independent of whether their data have health implications for their relatives [52]. This question warrants further attention and studies are needed that focus on other types of health data.…”

Section: Post-mortem Use Of Data For Research: An Underexplored Areamentioning

confidence: 99%

Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

et al. 2019

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The majority of biobank policies and consent forms do not address post-mortem use of data for medical research, thus causing uncertainty after research participants' death. This systematic review identifies studies examining stakeholders' perspectives on this issue. We conducted a search in MEDLINE, CINAHL, EMBASE and Web of Science. Findings were categorised in two themes: (1) views on the use of data for medical research after participants' death, and (2) perspectives regarding the post-mortem return of individual genetic research results. An important subtheme was the appropriate authority and degree of control over posthumous use of data. The sixteen included studies all focused on genetic data and used quantitative and qualitative methods to survey perspectives of research participants, family members, researchers and Institutional Review Board members. Acceptability of post-mortem use of data for medical research was high among research participants and their relatives. Most stakeholders thought participants should be informed about post-mortem research uses during initial consent. Between lay persons and professionals, disagreement exists about whether relatives should receive actionable genetic findings, and whether the deceased's previous preferences can be overridden. We conclude that regulations and ethical guidance should leave room for post-mortem use of personal data for research, provided that informed consent procedures are transparent on this issue, including the return of individual research findings to relatives. Future research is needed to explore underlying causes for differences in views, as well as ethical and legal issues on the appropriate level of control by deceased research participants (while alive) and their relatives.

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Section: Post-mortem Use Of Data For Research: An Underexplored Areamentioning

confidence: 99%

Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

et al. 2019

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“…For instance, participants’ personal information may be used for secondary research that goes against their religious beliefs. If knowledge of the harm is not a necessary condition for harm, then deceased SCA victims can be harmed in terms of their ‘ante-mortem’ person’s rights or their legacy [ 26 ]. However, the discussion on post-mortem privacy is still unresolved, and few guidelines address the rights of deceased persons.…”

Section: ‘First Do No Harm’: Potential Risks To Patientsmentioning

confidence: 99%

“…However, the discussion on post-mortem privacy is still unresolved, and few guidelines address the rights of deceased persons. The European Court of Human Rights only recognises privacy rights for the deceased when they are connected to living individuals, as is the case with genetic data which may contain sensitive information about living relatives [ 26 ].…”

Section: ‘First Do No Harm’: Potential Risks To Patientsmentioning

confidence: 99%

Ethical aspects of sudden cardiac arrest research using observational data: a narrative review

et al. 2018

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Sudden cardiac arrest (SCA) accounts for half of all cardiac deaths in Europe. In recent years, large-scale SCA registries have been set up to enable observational studies into risk factors and the effect of treatment approaches. The increasing scale and variety of data sources, coupled with the implementation of a new European data protection legal framework, causes researchers to struggle with how to handle these ‘big data’. Data protection in the SCA setting is especially complex since patients become at least temporarily incapacitated, and are thus unable to provide prospective informed consent, and because the majority of patients do not survive. A narrative review employing a systematic literature search was conducted to thematically analyse ethical aspects of non-interventional emergency medicine and critical care research. Although the identified issues may apply to a wider patient population, we describe them within the context of SCA research. Potential harms were found to include: privacy breaches, genetic discrimination and issues associated with the disclosure of individual findings, study design and application of research results. Measures proposed to mitigate harms were: alternative informed consent models including deferred or waived consent and data governance approaches promoting data security, responsible sharing and public engagement. The themes identified in this study may serve as a basis for a much-needed ethical framework regarding research with data from patients with acute and critical illness such as SCA.Electronic supplementary materialThe online version of this article (10.1186/s13054-018-2153-3) contains supplementary material, which is available to authorized users.

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“…Current regulation in most countries permits the finding of 434 mechanisms to regulate a digital user's footprint by means of, 435 for example, the protection of their personal data, intellectual 436 property, regulation of digital services or even inheritance law 437 ( Buitelaar, 2017 ).…”

Section: Digital Footprint Regulation: Experiences Comparedmentioning

confidence: 99%

How do we provide the digital footprint with eternal rest? Some criteria for legislation regulating digital wills

Martínez

2018

Computer Law & Security Review

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This article analyses the implications of the death of digital service users on their digital footprint and assesses some of the solutions-contractual and legislative-that have been posited to date by digital service providers and by Parliaments of a few countries. In view of the different initiatives analysed, and the experience gained in their implementation, the paper presents legal certainty, effectiveness and transparency as criteria that should guide the regulation of the digital footprint in the case of death. These criteria must allow for the adoption or regulation of mechanisms for managing the digital footprint of digital service users to be clear and trustworthy for them and efficient and easily recognized and adopted by digital service providers.

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Post-mortem privacy and informational self-determination

Cited by 30 publications

References 21 publications

Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

Ethical aspects of sudden cardiac arrest research using observational data: a narrative review

How do we provide the digital footprint with eternal rest? Some criteria for legislation regulating digital wills

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