Transplantation Ethics

As a medical anthropologist, I study the culture of medicine as it affects patients, healthcare providers, and society at large. I am interested broadly in the problem of clinical uncertainty, and the complex social dynamics and moral problems that arise from it.  Medical practice often must balance precariously on the knife’s edge between offering healing and doing harm, because many of our most powerful therapeutic tools contain the potential for both.  Deciding what can be risked in the hope of helping cannot rely on scientific data alone, but is powerfully guided by social norms and moral values as well.  My research looks to understand how such difficult decisions are made and experienced by the patients, clinicians, and policy-makers faced with them. 

I have explored these issues in two areas of medicine where the balance between saving life and risking it can be uncertain: organ transplantation and pain management.  As an anthropologist, I am interested in comparing how different cultures respond to the problem of clinical uncertainty, and so have studied these issues in the U.S., Mexico, and Spain.

Organ Transplantation

My research on organ transplantation focuses primarily on the social and ethical questions raised by living organ donation.  I have conducted in-depth interviews with living kidney and liver donors in the U.S. to explore how they came to donate and what their post-donation experiences have been.  I have also carried out extensive fieldwork in Mexico to study the development of living donor kidney transplantation there, and its impact on families, the healthcare system, and national politics.  My work on transplantation appears in numerous journal articles and is published in my recent book Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico.

Pain

Pain is the most common reason for seeking medical care in the U.S.  Yet the subjectivity of pain and the risks that accompany many pain medications often leave clinicians uncertain about how best to assess and treat it.  This uncertainty can produce frustration and even conflict with patients, making pain management a highly contentious area of both clinical practice and public policy.  Using shadow observations and in-depth interviews, I have been studying how clinicians and patients interact and make decisions around pain.  This ongoing research seeks to shed light on these difficult dynamics, and forms the basis of my second book project.

For more information, please see my faculty profile.

Publications

See publications in PubMed.

Contact

Contact Megan Crowley-Matoka, PhD, at 312-503-7962.

Ethical issue in Pediatric Cardiology

I am interested in issues that affect decision-making, informed consent, and implications of policy recommendations in pediatric cardiology. To this end, I have pursued research relating to:  

• Implications of universal lipid screening and statin therapy in children
• Pediatrician attitudes towards universal electrocardiogram screening and its implications
• Variations in practices for heart transplant listing among pediatric transplant cardiologist
• Presence of concomitant genetic abnormalities in neonates undergoing surgery for congenital heart disease and its potential impact on parental decision making
• Parental refusal of surgery for congenital heart disease

Bioethics Certificate Program

I am involved in creating a bioethics certificate program for graduate medical trainees.  Clinical medical ethics or bioethics has long been recognized as an important component of residency education and requires that residents are provided educational experiences to demonstrate competency in professionalism and interpersonal and communication skills. Specifically, understanding ethical principles, identifying ethical issues encountered in medicine, and demonstrating the ability to perform ethical analysis is critical in clinical decision-making when it involves consideration of patient and family values.   Training physicians to do this well and be leaders in the future in biomedical ethics education can be challenging.  My goals for this program are to: 

• Evaluate the current landscape of trainee education with a rigorous needs assessment
• Explore methodologies to develop a curriculum that will not only effectively teach ethics to medical trainees but will also identify tools that will translate to trainees’ future careers

For more information, please see my faculty profile.  

Publications

See publications in PubMed.

Contact

Contact Angira Patel, MD/MPH, at 312-227-4100.

As a medical anthropologist with training in clinical medical ethics, my research draws upon anthropological perspectives to illuminate tacit assumptions in medicine and ethical issues as cultural systems. My research leverages ethnographic research methods to assess and express patients’ and healthcare providers’ constructs of risk and benefit to develop and implement patient-centered educational materials to optimize informed consent in the transplant setting. Additionally, my research aims to reduce health disparities among minorities by developing and implementing culturally-sensitive healthcare practices. I develop ehealth interventions (e.g., a bilingual website and a mobile app) to facilitate patient treatment decision-making and informed consent.

Current Research

I am the Principal Investigator on an NIH-funded R01 study entitled, “A Culturally Targeted Transplant Program to Increase Live Kidney Donation in Hispanics.” The Hispanic population faces a disparity in access to kidney transplantation, particularly in living donor kidney transplantation. Through this multi-site, five-year study, my co-Principal Investigator and I are implementing Northwestern’s culturally-targetedHispanic/Latino Kidney Transplant Program at two transplant centers to evaluate whether the Hispanic Kidney Transplant Program is associated with increases in Hispanic living kidney donor transplantation and a reduction in Hispanic disparities in living donation.

I am the Principal Investigator on an NIH-funded R03 study entitled, “Ethical and Sociocultural Implications of Genetic Testing in Transplantation.” African American potential living kidney donors are disproportionately more likely to get kidney failure post-donation than European Americans. Apolipoprotein L1 (APOL1) gene variants may explain this disparity as they are significantly associated with kidney failure chiefly in African Americans. This study aims to assess the ethical and sociocultural implications of the controversial practice of APOL1 testing for African American living donors, and develop culturally-sensitive educational materials for genetic counseling about APOL1 testing in order to improve living donors’ safety, informed consent, and reduce disparities in African American living donor outcomes.

I am also a co-investigator on two studies that are funded by the Greenwall Foundation.

• “The Social Support Criterion in Transplantation: Considerations for Distributive and Procedural Justice”
  PI: Keren Ladin, PhD, Tufts University
• “Balancing Non-Maleficence and Autonomy: Establishing Ethical Risk Threshold for Living Kidney Donors”
  PI: Sanjay Kulkarni, MD, Yale University

For more information, please see my faculty profile.

Publications

See publications in PubMed.

Contact

Contact Elisa Gordon, PhD, MPH, at 312-503-5563.