Table 1 ELSI Issues Raised by Microbiome Research relative to Biobank and Related Studies
ELSI Consideration | Nature of concern | New issues introduced by HMB research |
|---|---|---|
Privacy and Confidentiality | - Discrimination and stigmatisation | - Increased scope of disease predisposition testing - Microbial fingerprints - Potential knowledge of past exposures |
|  |    • For example, predisposition and susceptibility testing |  |
Consent | - Respecting autonomy - Invasiveness of sample collection | - Cultural and personal acceptability of research |
|  |    • E.g., research participation of minors (e.g. newborn blood spot collection) |    - E.g., Vaginal and fecal sample collection |
Ownership | - Human dignity - Benefit sharing | - Samples traditionally considered waste, such as fecal matter |
|  |    • E.g., ownership of blood/tissue samples and cell lines |    - E.g., fecal transplant |
Return of Results | - Clinical validity - 'right to know' versus 'right not to know' | - Additional treatment and screening possibilities |
Biobank Governance | - Public trust and consideration of societal viewpoints | - Infectious disease |
|  |    • E.g., ensuring minority viewpoints are considered |  |
Justice | - Resource allocation | - Global health |
|  |    • For example, payment and health insurance coverage of genetic tests and pharmacogenomics |  |