A person’s life has a clear beginning and end, but the situation is more complex when it comes to genomic data. When someone undergoes genetic testing in a clinical setting or participates in a research project, their genomic data may be stored in databases long after they (the data subject) have passed away. This is because genetic and genomic data can retain long-term value for research, healthcare and even family members.
As scientific knowledge evolves, existing data may be analysed again or reinterpreted, for example, for new research purposes. As technologies and analytical methods improve, older datasets can yield new insights that were not possible when the data was first generated. As a result, genomic data is often retained, reused and shared across different domains, including research, healthcare and, in some cases, forensics.
The long-lasting value of genomic data extends to the private sphere as well, as their post-mortem use can have consequences for biological relatives. Just as during a person’s lifetime, genomic information may reveal health-related findings that are relevant for family members (see the dedicated topic page on cascade screening for more information).
This raises questions about how such information should be managed after death, including whether, how and to whom relevant findings should be communicated, as well as how potential benefits should be balanced against possible psychological, social or privacy-related harms.
The continued use of genomic data after death raises broader ethical, legal and societal questions. These include how consent for post-mortem data use should be handled, how privacy can be protected, and which legal frameworks should apply.
Exploring the conditions under which genetic and genomic data can be reused after death is increasingly important, given the growing scale of data storage and sharing across multiple sectors. This page aims to support discussions with citizens around how post-mortem genomic data can be managed in ways that are ethical, legally robust and worthy of public trust.
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