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EthicsLab RAG Research Overview
The EthicsLab RAG provides a forum to discuss some of the biggest challenges and advances in ethics research. Ethics research relates to people’s values, and how they intersect with healthcare. This research uses many methods, both qualitative and quantitative, and intersects with many (most) other fields of research.
Our members are interested in a broad range of topics, including decision-making processes used by parents of children with serious illnesses, involving children in decision-making, clinicians' views regarding fetal surgery, the impact of uncertain genetic testing results on clinical decisions, clinician perception of severe pediatric brain injury, involving clinicians in institutional fundraising, the nature of pediatric ethics consultations, behaviors mitigating moral distress among residents in training, ethical aspects of conducting research with children and families, and health policies affecting pediatric patients and families.
We also conduct ethics research using a range of empirical methods, such as controlled experimental studies through the use of vignettes; discrete choice experiments to assess values with parents and clinicians; national surveys of clinicians regarding knowledge, attitudes, and practices; qualitative interviews with parents and clinicians; codesigning interventions with families and clinicians; and systematic research reviews and meta-analysis.
Learn more about our wide range of topics to see which areas might be of interest to you.
Shared Decision-making
We identified shortcomings in traditional shared decision-making models that usually focus on isolated decisions. This is in contrast to the string of decisions that usually are part of the longitudinal care of pediatric patients with serious or chronic illnesses.
Children benefit from being involved in decisions about participation in research. We have examined youth, parent, and clinician perspectives on involving youth in medical decision-making on topics such as short stature, diabetes treatment, and participation in research. We also reviewed the empirical literature on the benefits and challenges of telling terminally ill adolescents about how serious their illness is and involving them in discussions of their care.
We maintained that parents usually make a series of decisions and that the decision-making process is emotionally charged, influenced by "good parent" beliefs.
Clinician Decision-making
In a study where clinicians were randomly assigned pediatric end-of-life care vignettes with different descriptions of the families, we found that certain factors, such as how involved the family seemed in the child’s care, influenced whether clinicians agreed to continue what they might otherwise deem to be futile medical care.
We examined clinician attitudes toward prenatal surgery and found that many clinicians placed high priority on reducing the chances of future disability even if it meant a higher risk of mortality after the procedure.
We also investigated the challenges involved in predicting outcomes among children with severe brain injury and how to communicate effectively with families when there are high levels of prognostic uncertainly.
We conducted an experimental study using hypothetical scenarios that showed support from senior team members reduced experiences of moral distress in difficult patient care situations. We are currently developing an educational intervention based on these findings.
Comparative effectiveness research trials contain potential risks for participants that are not obvious or intuitive. Researchers must carefully consider how to present these risks to participants without overwhelming them with too much information. We also reasoned that poorly designed studies to classify seriously ill children at different levels of risk while identifying the benefits of specific mitigation interventions may result in failure because the problem is poorly defined. The studies create new ethical problems, such as incorrectly excluding some children from beneficial interventions.
We also examined the role of ethics research in responses to pandemics such as COVID-19, the role of payment in increasing participation among racial and ethnic minorities, parent and child perceptions of the benefits of research, and what kinds of hopes clinicians communicate to families about participating in research.
We have found that parent beliefs about what a "good parent" should do play an important role in the difficult decisions they make about their child's healthcare. These beliefs include "making sure that my child feels loved," "focusing on my child's health," and "focusing on my child's comfort."
Important findings reveal that asking parents of seriously ill children to discuss their good parent beliefs does not cause additional stress, offers benefits to parents, and can help clinicians better understand parents' priorities in making healthcare decisions for their child. We have also found these beliefs may change over time, suggesting that clinicians should check in with parents about their beliefs regularly.
We randomly assigned clinicians to read clinical vignettes with different kinds of genetic testing results, including results that were ambiguous or uncertain. We found that uncertain information influenced the clinicians' care recommendations, suggesting that clinicians did not always understand the limitations of information gathered from genetic testing.
In a review of genetic testing research, we found that studies used inconsistent definitions of utility of genetic testing findings, and often defined "utility" as documenting any change in the child's care rather than any benefit to the child or family.
We have identified gaps and variations in policies that have ethical implications. In one review, we found that most U.S. states do not have "Do Not Attempt Resuscitation" policies in public school settings, indicating that the end-of-life care choices of children with serious illnesses who attend school may not be followed.
In another study, we found the Institutional Review Boards at different institutions had different standards for compensating participants or obtaining assent from children in research studies even if the study protocol was identical.
Our team discovered that clinicians have mixed attitudes about asking patients for donations to the institution, with some being comfortable with this practice but most worrying that such requests could interfere with their relationship with patients or create a conflict of interest.
We also found that some healthcare workers who view mandatory flu vaccination policies as coercive may still recognize that such policies are beneficial in protecting patients and families.
Although current guidelines call for pediatric ethics consultation services in children's hospitals, we discovered that one third of children's hospitals in the United States do not have ethics consultation services, wide variations exist in funding and staffing among these services, and ethics consultants often do not have protected time for ethics work. Additionally, these services vary in how closely they follow recommended practices, and are often difficult for patients and families to learn about and contact.
In a review of hundreds of pediatric ethics consults, we found certain contextual attributes were associated with core problematic issues, including the intensity of treatment and requests for consults. In some cases, strong emotions or entrenched positions required mediation between the parties to find a common ground as opposed to a standard ethical analysis. We also noted the benefits of ethics consultants meeting with the clinical team rather than directly with the family.
A national survey of pediatricians with experience in ethics consultations indicated doctors were most likely to request them in the context of end-of-life care and during conflicts with the family or within the clinical team. Mediation skills and ethics knowledge were the most highly valued characteristics among ethics consultants.
Fetal Interventions
Outcomes for premature babies, especially lung health, improve dramatically after 25 weeks. Our recently developed EXTra-uterine Environment of Neonatal Development (EXTEND) technology system may help bridge the gap between 22 weeks and 25 weeks. This technology has caused considerable ethical debate and discussion, but our review found that most of the debate focused on issues not relevant or feasible with the current technology, such as a complete pregnancy from conception to birth taking place outside of the human body.
Artificial Intelligence and Machine Learning
Machine learning may offer benefits in healthcare applications, but we must carefully consider the ethical implications of such technologies in advance rather than in a reactive, ad hoc manner. Machine learning may create new challenges in healthcare workflows, including:
- Increasing efficiency in one area while creating backlogs in another
- Reinforcing preexisting biases, and
- Worsening disparities
We have proposed a framework for developing, implementing, and evaluating the application of machine learning in healthcare settings to systematically identify ethical considerations.
Technology in Medicine
Many of the projects above explore the ethical implications of new technology (drugs as well as devices) in pediatric care. We also often explore the ethical implications of the use of technology in the care of medically complex children dependent on this technology to sustain life.
We examined the often-close relationship between pediatric ethics and pediatric palliative care and proposed guidance on assuring the appropriateness of this relationship. Many of our projects explore ethical issues related to pediatric palliative care and end-of-life care. Patients receiving pediatric palliative care often have complex, life-shortening conditions that raise important ethical questions about quality of life, stress experienced by parents and clinicians, and the appropriate use of technology in caring for these patients. We also examined how ethical principles can be applied to specific areas such as neuropalliative care.