Oral History of Norman "Norm" C. Fost

This interview with Norman “Norm” C. Fost, MD, MPH, was conducted by Suzanne Snider on June 25 and June 26, 2022 in Madison, Wisconsin, as part of Moral Histories: Voices and Stories from the Founding Figures of Bioethics, an oral history project of the Johns Hopkins Berman Institute of Bioethics. Dr. Fost is Professor Emeritus in the Division of Child Protection in the Department of Pediatrics at the University of Wisconsin (UW) School of Medicine and Public Health. He founded the Program in Bioethics at UW and chaired both the UW Institutional Review Board (IRB) and UW Hospital and Clinics Ethics Committee for 30 years. Dr. Fost’s areas of expertise include ethics and human subjects research, end-of-life decision making in infants, performance-enhancing drugs, organ transplantation, and gene therapy.On Day 1, Dr. Fost discusses at length his childhood in Belleville, New Jersey, including his culturally Jewish, leftist upbringing and the influence of his father’s role as a pediatrician on his own career track. Dr. Fost describes his choice to go to Princeton University and become pre-med and shares a pivotal story in which he stands up for his Jewish friends as part of their applying to join a social club while at Princeton, a lifelong lesson in resisting the status quo. Dr. Fost tells the story of being at Johns Hopkins Hospital as a medical resident and the questions raised by the so-called “Hopkins Mongol” case, a landmark bioethics case involving a child with Down syndrome. He further describes how cognitive or physical disabilities have been viewed in medicine and throughout history. Dr. Fost shares his experience as a patient post-appendectomy (while in medical school) and his subsequent approach to patient care as a result.Dr. Fost also discusses his early interest in what is now called bioethics and how he crafted his education so he could explore medicine, specifically pediatrics, while incorporating legal and philosophical frameworks. He talks about being the first fellow in a new bioethics fellowship program at Harvard University in 1972. He names his mentors: Paul Ramsey while an undergraduate at Princeton, Jay Katz while in medical school at Yale University, and Robert E. “Bob” Cooke as a pediatric resident at Johns Hopkins. Dr. Fost describes his wish to be both a pediatrician and bioethicist and his mentors’ doubts about this dual profession. He explains his choice to teach at University of Wisconsin (UW) and receiving support from Cooke and the UW Chief of Pediatrics Charles Lobeck during this process.On Day 2 of the interview, Dr. Fost talks at length about how institutional structures were formed in the 1970s to explore ethical issues in medicine and research. He describes his involvement with institutional review boards (IRBs), the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission), and President Clinton’s Task Force on National Health Care Reform. Dr. Fost expands on the importance of the Belmont Report while reflecting on the common misuse and oversimplification of the principles specified in it. He differentiates between therapeutic and non-therapeutic research involving children. He spends time parsing the facets of informed consent and situations he considers to be more coercive and therefore undermine consent.Dr. Fost speaks briefly about controversial studies in medical history including the Willowbrook study and the United States Public Health Service Syphilis Study, informally referred to as the Tuskegee Syphilis Study. Dr. Fost describes an article he co-authored with lawyer-bioethicist John Robertson about different tiers of medical neglect and criminal law violation in cases involving children with disabilities. He speaks about his stance on the role of performance-enhancing drugs in sports. Dr. Fost expands upon his involvement with ethics committees and IRBs at UW and beyond. He also reflects on how one of the most meaningful parts of his career has been the opportunity to impact his students over the years.This interview may be of interest to those wishing to learn more about: the field of bioethics, the history of bioethics in the US, the creation of Institutional Review Boards (IRBs) in the 1970s; bioethics and interdisciplinarity, especially those seeking unconventional career tracks within medicine; pediatrics; children and dying; personal medical experiences of bioethicists; disability and bioethics; regional histories of bioethics (Midwest); University of Wisconsin; Yale alumni experience; the Kennedy family and bioethics; Jewish experience and antisemitism; and bioethics and the arts

Defining the role of common variation in the genomic and biological architecture of adult human height

Using genome-wide data from 253,288 individuals, we identified 697 variants at genome-wide significance that together explained one-fifth of the heritability for adult height. By testing different numbers of variants in independent studies, we show that the most strongly associated ∼2,000, ∼3,700 and ∼9,500 SNPs explained ∼21%, ∼24% and ∼29% of phenotypic variance. Furthermore, all common variants together captured 60% of heritability. The 697 variants clustered in 423 loci were enriched for genes, pathways and tissue types known to be involved in growth and together implicated genes and pathways not highlighted in earlier efforts, such as signaling by fibroblast growth factors, WNT/β-catenin and chondroitin sulfate-related genes. We identified several genes and pathways not previously connected with human skeletal growth, including mTOR, osteoglycin and binding of hyaluronic acid. Our results indicate a genetic architecture for human height that is characterized by a very large but finite number (thousands) of causal variants