The idea of ‘precision medicine’ has become the subject of much discussion, following US President Barak Obama’s 2015 State of the Union address. In his speech, President Obama promised to invest $215 million in a ground-breaking ‘precision medicine’ initiative, with the short-term aim of running drug trials for targeted cancer treatments.
Precision medicine sounds great in theory – it gives clinicians tools to identify the specific molecular/genetic profile underlying a patient’s health, disease, or condition, and thus offer more effective, targeted treatments.
But are there any attendant bioethical concerns?
De Paul University bioethicist Craig Klugeman has raised questions about privacy controls on genetic information:
“Privacy is the main bioethical issue raised by the framers of this initiative. Given the record of companies and institutions with maintaining online privacy, I’m not sure we should yet be confident that privacy could be assured. And then consider that health information will be collected via mobile devices and transmitted wirelessly presenting additional opportunities for privacy breaches.”
A similar concern has been raised by the Duke Center for Personalised and Precision Medicine. As the center’s website points out, studies of publically-available sequence data have shown that patients in research studies can be identified by their genome sequences.
There are also ethical concerns about the release of incidental findings. With such a massive increase in the amount of genetic information being collected – Obama’s program envisages a genetic database of over 1 million participants – ethical dilemmas involving significant incidental discoveries will be more common. Who should decide which findings get relayed back to patients?
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.