Research and Ethics in the Time of COVID-19
|Image courtesy of Wikimedia Commons
The current COVID-19 public health crisis has upended our personal and professional lives. The pandemic’s impact has been acutely felt in the biomedical research enterprise, affecting research, resources, and personnel. It also magnifies a number of existing ethical issues. To learn first-hand about the COVID-related research issues and associated ethical challenges that investigators are navigating, a neuroethics-focused session was held at the (virtual) annual Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Investigators Meeting on June 1, 2020. This blog post provides an overview of the session and a recap of some of the ethical issues raised by the group.
To kick off the session, meeting attendees heard from Drs. Christine Grady and Scott Kim, faculty at the NIH Clinical Center Department of Bioethics. They presented key points from their recent Neurology commentary: Ethics in the time of COVID: What remains the same and what is different.1 The goals of this presentation were to provide a brief general overview of the ethical issues raised by the COVID-19 pandemic, namely that in the context of a global pandemic, there has been a massive public health and scientific response that has raised myriad questions on clinical ethics, public health ethics, and science and research ethics, all of which neuroethics can touch on. This presentation aimed to draw attention to relevant neuroethical issues and provide a background for a discussion that included first-hand experiences from BRAIN researchers.
We have learned over the last several months that these COVID-induced ethical challenges affect the healthcare system and its providers and that these issues are especially acute for patients with brain diseases and disorders. Other ethical challenges are raised for existing neuroscience research across basic and clinical domains. Some of the issues are raised because ongoing research studies have been delayed or temporarily halted, because the pandemic has severely affected the ability of researchers to recruit and work with trial participants, and also because the changes in research procedures have affected the ways in which a trial is conducted.
Following the presentation from Drs. Grady and Kim, meeting attendees broke-out into small-group discussions, intentionally structured to provide an interactive format for them to speak freely. Groups were no larger than 8 people and always included at least one neuroethicist and one discussion facilitator.
Some of the recurring themes from the small-group discussions included:
- The amplification of vulnerability in populations
- For research participants, a few examples of this issue included changes in participant protection measures when planned follow-up is no longer able to occur in/might be altered from a way that was originally specified.
- Attendees raised questions on patients and their families; for example, how would they be advised to proceed if the prognosis is different than it would have been, without a pandemic? For instance, social distancing might require tele-health and/or delay in-person appointments, which can accommodate some interactions (e.g., verbal communications between researchers and participants), but not others (e.g., full medical examinations).
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Finally, there were also questions on the disparities in digital access. For instance, a study might collect data from research participants and store it for those participants to view and for investigators to access. However, if investigators and participants do not have access to the same levels of internet, web, and cloud-based storage access, then these disparities could exacerbate the already present digital divide. Further, when it comes to that data access, attendees raised questions on how the information is used, what it is used for, and how the pandemic has changed how we think about these issues. This issue might be especially relevant for neurological and psychiatric populations that have been affected and are more disadvantaged relative to normal standards.
- The pandemic might present an opportunity to expand the scope of neuroethics, for instance to include thinking about fairness in doing science, as well as inclusivity of people and topics within neuroscience.
- Noted were the changes to research and clinical protocols in response to COVID-raised questions such as: how might investigators restart research, or evaluate new research, and navigate the ethical issues that arise? As scientific protocols have been forced to change, questions arise as to the scientific validity of the collected data, particularly for longitudinal studies across both basic and clinical domains. In these circumstances, how might those modifications be reported?
- Also discussed were the challenges in the changes to the risk-benefit profiles of research. As research is restarted, COVID-related risks may have emerged that were not present when the research protocols were originally approved. How do investigators navigate the halt and restart of that research, aiming to minimize those risks while balancing research benefits?
- Attendees spoke about changes in the social and societal value of their research. They noted the value of listening to research participants, who may find social benefits through interactions with researchers and feel great value in taking part in these studies, and they raised the question: how does the pandemic change that perception for these individuals?
The COVID-19 public health crisis provides opportunities to thoughtfully consider and tackle ethical issues arising in this pandemic, though it also presents challenges as the situation continues to rapidly unfold, sometimes in unpredictable ways. As the pandemic continues to evolve, efforts should be made to continue to consider and address ethical issues that may be similar – or different – in these uncertain times.
A poster presentation on the themes from this meeting will take place at the virtual International Neuroethics Society meeting on October 22-23, 2020.
Acknowledgements: The authors thank the participants and organizers of the Neuroethics-focused session at the BRAIN Investigators’ Meeting.
- Kim, S., & Grady, C. (2020). Ethics in the time of COVID: What remains the same and what is different. Neurology, 94(23), 1007-1008.
Nina Hsu, Ph.D., is a neuroscientist and Health Science Policy Analyst in the Neuroscience Content and Strategy Branch of the Office of Neuroscience Communications and Engagement (ONCE) at the National Institute of Neurological Disorders and Stroke (NINDS) at NIH. She serves as Science Committee Specialist for the BRAIN Neuroethics Working Group and was previously Science Committee Specialist for the ACD BRAIN Initiative Working Group 2.0.
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Hsu, N. (2020). “Research and Ethics in the Time of COVID-19”. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2020/10/research-and-ethics-in-time-of-covid-19.html.