Genetic Databases: Who is Liable, When, and For What?

On Friday 26th May 2017, the Centre for Law, Medicine and Life Sciences (LML) will be hosting a Roundtable to discuss the topic of 'Legal Liability for Genetic Databases'.

What sort of harm can be caused by genetic databases, who is legally responsible, and in what circumstances?

The recent US case, Willams v Quest/Athena, provides an interesting case study. A parent is currently in the process of suing various people associated with a genetic sequence database (eg the database managers and the treating clinician) for the wrongful death of her son. She alleges that the defendants failed to recognise that what they had recorded as a variant of unknown significance (VUS) was actually known to be a significant disease-causing variant, but the database had not been updated to reflect this. The negligent classification resulted in a late diagnosis of Dravet Syndrome; her son's symptoms worsened and he died.

(Due to space constraints, this Event is by invitation only.)

The event will open with a presentation by Prof. Bartha Knoppers, followed by a discussion session. Five core questions will be  considered during the Roundtable:

1.     In what circumstances might liability arise in the UK for harm caused by genetic databases? We will discuss this from the perspective of database operators, managers, and clinicians.

2.     What additional complexity arises with multinational databases?

3.     What specific issues arise for scientists and clinicians in practice?

4.     What steps would help minimise or appropriately manage liability?

5.     Are there any novel legal questions warranting further academic legal research?