Faculty, Staff and Student Publications
Language
English
Publication Date
6-1-2024
Journal
Proceedings of the IEEE International Conference on Healthcare Informatics
DOI
10.1109/ichi61247.2024.00102
PMID
40200994
PMCID
PMC11976530
PubMedCentral® Posted Date
4-8-2025
PubMedCentral® Full Text Version
Author MSS
Abstract
Demand for genomic research data and genetic testing results from cancer patients has grown exponentially. When a patient is diagnosed with a hereditary cancer syndrome, standard practice is for providers to encourage patients to discuss their results with their relatives and encourage those relatives to have clinical genetic testing and possibly participate in genetic research. Genomic research data and genetic testing results are being shared and connected in ways never imagined. Genomic data sharing is critical for advancing precision health and increasing diversity in global genome databases. However, these advancements often come with undesirable consequences, which call for additional privacy safeguards and research practices to protect hereditary cancer patients and their families because relatives who may have genomic information in common with the patient causing privacy risks to ripple throughout a kinship network. We propose to address this gap using an interdisciplinary approach integrating bioethical principles (autonomy, non-maleficence, beneficence, respect for persons, and equity) with data science techniques to mitigate privacy risk challenges.
Keywords
Human genome, privacy, hereditary cancer, data sharing
Published Open-Access
yes
Recommended Citation
, "An Ethical Approach to Genomic Privacy Preserving Technology Development" (2024). Faculty, Staff and Student Publications. 921.
https://digitalcommons.library.tmc.edu/uthshis_docs/921