I knew I wanted to be a doctor since my early childhood, and as a teenager I focused on neuroscience. I told my mother that I not only wanted to save lives, but I also wanted people to trust me with their lives. This summer I was excited to be a part of BRAINshare project with Baylor College of Medicineand researching the challenges and concerns that arise when sharing human neuroscience data to build ethical and empirically informed policies. Participation in BRAINshare has emphasized to me the importance of patient trust in academic research, particularly in the context of public-private partnerships within the BRAIN Initiative.
Partnership between the public and private sector:
The Brain Initiative It is a large research initiative aimed at understanding the human brain led by the National Institutes of Health and involving many other institutions. The initiative promotes Public-Private Partnerships (PPP). This collaboration brings together academic researchers, who often work at universities, and device manufacturers to study how to apply new technologies to treat neurological disorders.
BRAIN . Initiative Presents Information To the public about public-private partnerships related to several brain diseases. For example, Boston Scientific provides medical devices for academic researchers to study deep brain stimulation (DBS) for treatment-resistant depression. Another company, Medtronic, provides DBS devices for studies of essential tremor, depression, and neuropathic pain. Each PPP is unique, but there are some common features. Most importantly, public-private partnerships have an impact on data sharing. This is because public-private partnership contracts, called Collaborative Research Agreements (CRA), stipulate terms regarding (1) how human data generated during research will be shared between academic and industry parties while the research is being conducted and (2) who will own the data and which Patents inspired by data (company or researchers).
Public-private partnerships may affect patient confidence. Bioethics research in the context of genomics Show that patients can be wary about company involvement in biomedical research, especially if company ownership of data can lead to profits that are not shared, or if companies prevent data from being shared with others, reducing the public benefit.
Public-private partnerships have many potential benefits, such as enhancing scientific collaboration. Academic institutions do not have the expertise or capacity to manufacture the devices used in many of the research studies, so industry involvement is essential. However, public-private partnerships in neuroscience raise many policy challenges that are being identified and studied so that they can be addressed responsibly. One such challenge is improving transparency with patients in terms of how data is used and shared.
As I move forward as an aspiring researcher and neurologist, and in my work advocating for individuals who are underrepresented in medical research, I will consider several considerations regarding patient confidence and PPP. One is the importance of clarity in the informed consent process, particularly when it includes industry partners, andAnd the When companies might control patient data.
Another is the importance of sharing research data, where possible, in public repositories so that others can use it, which is a practice It also encourages the BRAIN . initiative. K The last editorial Note about neuroscience research: “A recurring theme … is the need for an easy way to store, share, and analyze data. … This has led to the creation of open repositories, such as Neurodata Without Borders, which enables researchers worldwide to access standardized data formats and metadata in the cloud, along with detailed information on experimental parameters and protocols. “
Listening to patients’ concerns and understanding their comfort levels with these aspects of research is essential to maintaining trust in public-private partnerships. Patients’ voices and opinions can, and should, help dictate what the future of neuroscience might look like. Improving transparency through informed consent and communication can go a long way toward empowering patients in this way. After all, without patients, there would be no medical research.
Written by Lauren Bennett, summer intern, Center for Medical Ethics and Health Policy at Baylor College of Medicine, Prairie View A&M University