Dr Aisling McMahon - Publicly funded biobanks and Intellectual Property Rights: Questions of access and public benefits

Aisling McMahon

Aisling McMahon joined Newcastle Law School as a lecturer in law in February 2014. Her principal research areas are medical law and IP law, with a particular interest in patents and biotechnology. Aisling has recently been awarded a British Academy/Leverhumle grant to examine the legal frameworks and approaches to gene patentability in the US, Canada and Europe. She was a visiting researcher at the Hastings Center and at  Yale in May 2017 and she has also recently been a Visiting Researcher at the Ethox Centre, Oxford.

Dr Aisling McMahon

Human biobanks provide organized collections of human biological material, generally stored alongside health information which are increasingly seen as vital tools for the furtherance of biomedical research, including aiding better understanding of human health and disease. This paper focuses on large-scale publicly funded biobanks. It examines the intellectual property rights (IPRs) that may arise in relation to downstream research generated using biological samples from such large-scale publicly-funded biobanks. It investigates how IPRs on downstream research sit within the biobanking context and the altruistic donation models and solidarity frameworks that have come to underlie recruitment of individual participants to donate samples to such biobanks. Individuals are often encouraged to donate biological samples and data in the spirt of solidarity whereby recruitment models stress the need for participation in the interest of public health and medical research. However, access to downstream benefits generated from research using such samples may be subject to IPRs. This has the potential to act as a double-edged sword. On the one hand IPRs are viewed as essential to incentivizing innovation in the health sphere. However, if asserted in an overly restrictive manner IPRs also have the potential to limit/hinder access for individuals and researchers to downstream inventions. The paper argues that it is imperative to deliver appropriate and reasonable access for the public to benefits arising downstream from research on samples in publicly-funded biobanks. It will examine mechanisms that may support this, and calls for further discussion around the operation of IPRs in the biobank context to maximize access, while maintaining sufficient incentives for health research.