Privacy and ethical challenges in next-generation sequencing.
Nicole Martinez-MartinDavid MagnusPublished in: Expert review of precision medicine and drug development (2019)
The use of NGS in clinical and research contexts has features that pose challenges for traditional ethical frameworks for protecting research participants and patients. NGS generates massive amounts of data and results that vary in terms of known clinical relevance. It is important to determine appropriate processes for protecting, managing and communicating the data. The use of machine learning for sequencing and interpretation of genomic data also raises concerns in terms of the potential for bias and potential implications for fiduciary obligations. NGS poses particular challenges in three main ethical areas: privacy, informed consent, and return of results.
Keyphrases
- big data
- machine learning
- electronic health record
- end stage renal disease
- artificial intelligence
- health information
- ejection fraction
- chronic kidney disease
- copy number
- prognostic factors
- healthcare
- human health
- single cell
- gene expression
- risk assessment
- patient reported outcomes
- dna methylation
- data analysis
- social media
- circulating tumor
- cell free