The previous sections have covered in detail both the theory and methodology behind normative and empirical bioethics. This section aims to bring all the previous lessons to their natural application in real research settings by illustrating how bioethics grants are written—specifically how normative and empirical aims are successfully interwoven. In what follows, real, successfully funded bioethics grants will be described alongside their respective specific aims.
Pediatric Deep Brain Stimulation: Neuroethics and Decision Making
Funder: NIH BRAIN Initiative (PIs: Jennifer Blumenthal-Barby, Gabriel Lazaro-Munoz, Eric Storch)
Aim 1: Examine neuroethics issues raised by pediatric DBS from the perspective of key stakeholders.
1.a. To examine the pressing neuroethics issues associated with pDBS for a movement disorder, we will conduct in-depth interviews to assess the perspectives and experiences of pDBS for dystonia stakeholders regarding the unique, exacerbated, and frequent neuroethics issues.
1.b. pDBS for psychiatric disorders may raise neuroethics issues distinct from those arising in pDBS for movement disorders. To examine these, we will also conduct in-depth interviews to assess the perspectives and experiences of pediatric refractory OCD stakeholders regarding the unique, exacerbated, and frequent neuroethics issues.
Aim 2: Identify decisional needs raised by pDBS from the perspective of key stakeholders. There is no empirical data about how pDBS stakeholders make decisions or what factors influence their deliberations about DBS. During the interviews conducted for Aim 1, we will also examine dystonia and OCD stakeholders’ decisional and informational needs regarding pDBS. This information will be vital for clinicians and other families with refractory movement or psychiatric disorders who will be involved in informed consent processes and decision making about whether to offer or undergo pDBS in the future.
Aim 3: Develop and user test a decision aid for caregivers considering pediatric DBS for dystonia. Pediatric DBS is an ongoing practice expected to rise; however, there is little guidance and tools to help stakeholders make informed decisions about it. DAs may be developed in different formats (e.g., brochures, videos, online tools), and increase patient understanding of possible interventions, accuracy of risk perceptions, decrease decisional conflict, promote care decisions that are more aligned with patients’ values, more satisfaction with care decisions, and improved communication with clinicians.
Physicians’ Moral Stress During COVID-19: A Qualitative Study of Systems Factors
Funder: Greenwall Making A Difference Program (PI: Mara Buchbinder)
We propose a bioethical study that integrates empirical methods with conceptual analysis to investigate moral stress experienced by physicians working on the front lines of COVID-19 care in two American cities. Our systems model acknowledges that societal-level factors (e.g., state/local public health policies), institutional-level factors (e.g., surge conditions, institutional policies, team culture), and professional-level factors (e.g., a professional community’s norms, beliefs, and practices) affect individual physicians’ moral stress and wellbeing in consequential and intersecting ways. We will conduct qualitative interviews with physicians in New York, NY (NYC) and Seattle, WA, the epicenters of the initial US outbreak that began in March 2020. Sampling physicians from diverse hospitals will enable us to assess how differences in state and local public health responses and institutional factors mediate the ways physicians respond to the crisis. Our specific aims are to:
Aim 1: Describe the relationships among the societal-, institutional-, professional-, and individual-level factors shaping physicians’ perceptions of moral stress during the COVID-19 pandemic, including and beyond initial outbreaks.
Aim 2: Assemble a conceptual framework that maps sources of moral stress for physicians arising at the societal-, institutional-, professional-, and individual-levels during crisis and normal conditions.
Aim 3. Develop and disseminate evidence-based recommendations, with expert panel input, to respond to moral stress in physicians and safeguard their personal and professional integrity during pandemic response and beyond.”
Ethical Dimensions of Abortion Practice in the Context of New Laws
Funder: Greenwall Making a Difference Program (PI: Anne D. Lyerly)
The proposed project builds on ongoing empirical research funded by the Society for Family Planning (SFP), described in detail below, that investigates the experiences of abortion providers (physicians, nurses, and physician’s assistants) and clinic managers in North Carolina following the implementation of HB 854 (“Women’s Right to Know Act”) in October 2011. The Women’s Right to Know Act (WRTKA) imposes regulations on when and how informed consent for abortions is obtained and is similar to laws in 17 other states in the US.1 Initially, the law also mandated that an ultrasound be performed and images described prior to the abortion, but this portion of the law was enjoined under a temporary injunction until a federal judge overturned it in January 2014 for violating First Amendment rights. The remainder of the law still stands. With support from the Greenwall Foundation, we will analyze interview data to complete the following specific aims:
Aim 1: Describe how abortion providers frame the moral dimensions of the challenges and opportunities they have experienced working under new legislation.
Aim 2: Develop a conceptual framework for analyzing how abortion providers navigate potential conflicts between personal and professional ethics, and legislative mandates.
Aim 3: Offer practical recommendations to physicians, professional organizations, and policymakers regarding ethical conduct in areas where law constrains accepted clinical practice.
A Framework for Surgeon-Patient Communication to Improve Informed Consent
Funder: Greenwall (PIs: Gretchen Schwarze, Bob Arnold)
The current structure and content of informed consent routinely fails to generate a treatment plan that is deliberately aligned with patient preferences because this conversation is dominated by explanations of disease and treatment, lacks focus on outcomes and trade-offs, and fails to situate the proposed treatment within the larger context of the patient’s overall health. We aim to develop a framework for surgeon-patient communication to better support patient autonomy in decision making.
Aim 1: To characterize the current state of preoperative communication and describe the gap between these practices and the goals of informed consent and shared decision making.
Aim 2: To develop recommendations to change the structure and content of preoperative communication.
Aim 3: To design a strategy to translate these recommendations into clinical practice.