When a human subject is involved with a scientific study, researchers must obtain informed consent, right? Well, if the study in question involves genomics research, the answer isn’t so clear.
The biological material that’s gathered in a routine hospital visit (like a blood sample) can end up in a biobank where it may be stripped of identifiable information and sequenced for research purposes — without your knowledge or consent.
As genomic technology rapidly accelerates, questions arise about whether that pace may be outstripping our ability to regulate data and protect individual privacy.
In the second part of our conversation on genomics, we’ll discuss some of the legal and ethical concerns surrounding genome sequencing and dig into issues of informed consent, privacy and data security. Click here to listen back to the first part of our conversation on genomics and the move to personalized medicine.
- Jennifer Kulynych: Senior legal counsel, Johns Hopkins Medical Center and health system
- Kelly Ormond: Professor of genetics and biomedical ethics, Stanford University