2023–2024 Bioethics Project: Beyond the Medical-Industrial Complex — Reimagining Healthcare
This year’s Bioethics Project theme is “Beyond the Medical-Industrial Complex — Reimagining Healthcare.” During the summer, students learned key concepts and principles and heard from speakers from around the United States and Canada. The speakers addressed many topics, among them the impact of religion on medical treatment decisions, how medical humanities education helps train and sustain healthcare professionals, and the laws that regulate the practice of Medical Aid in Dying (MAiD) in the United States and Canada.
This fall, students are continuing their examination of various facets of healthcare delivery. One area of interest is assisted reproduction technology. The infertility industry is a multibillion-dollar one that provides services to help people struggling to conceive. These services include fertility testing, assisted reproductive technologies (ART), and egg and sperm donation. The infertility industry is growing rapidly, the result of the increasing prevalence of infertility, the growing demand for ART, the number of people who are postponing family formation, and the availability of insurance coverage for ART. Recently, students heard from Jessie Goldman, who leads partnerships at Cofertility, a woman-led start-up that is committed to making egg freezing and third-party reproduction more accessible, transparent, and human-centered. Ms. Goldman described Cofertility’s unique Split program, which enables women to freeze their eggs for free if they donate half of them to a family who otherwise cannot conceive. This program makes egg freezing more affordable and accessible to women who want to preserve their fertility options. Ms. Goldman also described Cofertility’s screening process for potential donors and the information the group provides to intended parents about donors’ medical and family histories and lifestyles. The goal is to help intended parents make informed decisions about whom to choose as an egg donor. The students talked with Ms. Goldman about an array of topics, such as differential access to ART, donor compensation, the ethical implications of freezing, adopting, donating, and destroying frozen embryos, and what types of regulation of the infertility industry would benefit potential donors and intended parents.
Students also met Brittany Schiavone and her mother, Sue, who discussed Brittany’s nonprofit organization, Brittany’s Baskets of Hope (BBOH), which celebrates the arrival of all babies, regardless of their abilities, and shows families that children with Down syndrome can achieve anything they set their minds to. BBOH brings information, support, guidance, and hope to families who are expecting or have newly welcomed a baby with Down syndrome. Brittany and Sue told the story of Brittany’s experience as a child who sometimes underwent bullying, how Brittany and her family coped with bias and misunderstanding, and how Brittany conceived the idea for BBOH and attained international recognition as a 2019 L’Oréal Paris Woman of Worth. Sue talked about their tireless advocacy with medical and social service providers so that Brittany could have critical therapies and interventions to help her maximize her educational opportunities, achieve entrepreneurial success, and live a more independent life. Students learned about historic and present-day experiences of many people with Down syndrome and their families involved with medical systems and government-support programs to help meet their diverse medical and social needs.
Most recently, students heard from Kimberly Mutcherson, who teaches at Rutgers Law School in its Camden location. Professor Mutcherson is a popular and award-winning professor and an author and lecturer on reproductive justice, bioethics, and family and health law. She has spoken on these subjects nationally and internationally. She received her bachelor’s degree from the University of Pennsylvania and her juris doctor from Columbia Law School. Professor Mutcherson introduced the students to the concept of reproductive justice, which concerns itself with reproductive autonomy, family building, and the ability to raise healthy children in safe and supportive communities with good access to healthcare and services. Professor Mutcherson and the students discussed historic issues and concerns in reproductive justice (eugenics laws, for example) and contemporary challenges that reproductive-justice scholars and advocates are addressing at the state and national levels.
In the coming months, the Bioethics Project will welcome more speakers who will provide education about novel approaches to organ donation and transplantation, pharmaceutical-industry regulation, the delivery of hospital-based medical care, public health, and many other topics. The students are eagerly looking forward to continued exploration of complex issues as they think about how to reimagine healthcare’ for the 21st century — and beyond.