An Ethical Approach to Genomic Privacy Preserving Technology Development

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.