Storing paediatric genomic data for sequential interrogation across the lifespan
Bibliographic Data
Genomic sequencing (GS) is increasingly used in paediatric medicine to aid in screening, research and treatment. Some health systems are trialling GS as a first-line test in newborn screening programmes. Questions about what to do with genomic data after it has been generated are becoming more pertinent. While other research has outlined the ethical reasons for storing deidentified genomic data to be used in research, the ethical case for storing data for future clinical use has not been explicated. In this paper, we examine the ethical case for storing genomic data with the intention of using it as a lifetime health resource. In this model, genomic data would be stored with the intention of reanalysis at certain points through one’s life. We argue this could benefit individuals and create an important public resource. However, several ethical challenges must first be met to achieve these benefits. We explore issues related to privacy, consent, justice and equality. We conclude by arguing that health systems should be moving towards futures that allow for the sequential interrogation of genomic data throughout the lifespan
Alternative medicine · Big data · Bioinformatics · Biology · Data mining · Data science · Economic Justice · Engineering ethics · Ethical issues · Genome · Genomic sequencing · Informed consent · Internet privacy · Interrogation · Personalized medicine · Political science · Precision medicine · Computer Science · Engineering · Ethics and Legal Issues in Pediatric Healthcare · Ethics in Clinical Research · Law · Medicine · Prenatal Screening and Diagnostics · Psychology · Genetics
| Citations per year | 1 |
|---|---|
| Citation span | 2026 - 2026 (1) |
| Highly cited | No |