I knew I wanted to become a doctor from my early childhood and as a teenager focused in on neurology. I told my mother that I wanted to not only save lives, but also for people to trust me with their lives. This summer I was excited to be part of the BRAINshare project with Baylor College of Medicine, researching challenges and concerns that arise in sharing human neuroscience data to construct ethical and empirically informed policies. Engagement in BRAINshare has underlined for me the importance of patient trust in academic research, particularly in the context of public-private partnerships within the BRAIN Initiative.
The BRAIN Initiative is a large research initiative geared toward understanding the human brain led by the National Institutes of Health and involving many other institutions. The Initiative promotes Public-private partnerships (PPP). These collaborations bring together academic investigators, mostly working at universities, and device manufacturing companies to study how new technologies can be applied to treat neurological disorders.
The BRAIN Initiative provides information to the public on PPP related to many brain diseases. For example, Boston Scientific provides medical devices to academic researchers to study deep brain stimulation (DBS) for treatment-resistant depression. Another company, Medtronic, provides DBS devices for studies related to essential tremor, depression and neuropathic pain. Each PPP is unique, but there are some common themes. Importantly, public-private partnerships have an impact on data sharing. This is because PPP contracts, called Collaborative Research Agreements (CRA), state terms related to (1) how human data generated during the research will be shared between the academic and industry parties while the research is happening and (2) who will own the data and any patents drawing on the data (the company or the researchers).
Public-private partnerships may affect patient trust. Bioethics research in the context of genomics has shown that patients can be wary about company involvement in biomedical research, especially if company ownership of data could lead to profits that are not shared, or if companies prevent the data from being shared with others, decreasing public benefit.
PPPs have many potential benefits, such as promoting scientific collaboration. Academic institutions do not have the expertise or capacity to manufacture the devices used in many research studies, so industry involvement is essential. However, public-private partnerships in neuroscience bring up many policy challenges that are being identified and studied so they can be addressed responsibly. One of these challenges is improving transparency with patients in terms of how data are used and shared.
As I move forward as an aspiring researcher and neurologist, and in my work advocating for individuals underrepresented in medical research, I will keep several considerations in mind in relation to patient trust and PPP. One is the importance of clarity in the informed consent process, especially when it involves industry partners, and, when companies may control patient data.
Another is the importance of sharing research data, where possible, in public repositories so that others can use it, a practice that the BRAIN Initiative also promotes. As a recent editorial noted about neuroscience research: “A recurring theme … is the need for a facile means of storing, sharing, and analyzing the data. …This has prompted the creation of open repositories, such as Neurodata Without Borders, that enable investigators around the world to access standardized data formats and metadata in the cloud, along with detailed information on experimental parameters and protocols.”
Listening to patient concerns and understanding their comfort levels with these aspects of research is necessary for maintaining trust in public-private partnerships. Patient voices and opinions can, and should, help dictate how the future of neuroscience could look. Improved transparency through informed consent and communication could go a long way toward empowering patients in this way. After all, without patients, there would be no medical research.
By Lauren Bennett, summer intern, Center for Medical Ethics and Health Policy at Baylor College of Medicine, senior at Prairie View A&M University