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David L. Rimoin Lifetime Achievement Award — John C. Carey

The ACMG Foundation's highest honor goes to John C. Carey, MD, MPH, FACMG, FAAP — Professor Emeritus of Pediatrics at the University of Utah and a >40-year career architect of clinical genetics, dysmorphology, and trisomy 13/18 patient advocacy.

  • Speaker / institution: John C. Carey, MD, MPH, FACMG, FAAP — Professor Emeritus of Pediatrics, University of Utah School of Medicine; former Division Chief of Medical Genetics; founding professional/medical advisor to SOFT (Support Organization for Trisomy 13/18)
  • Anchor type: award / legacy lecture
  • Day / session: Day 2 (Wed Mar 11, 2026) — Presidential Plenary, combined with ACMG Foundation Awards ceremony, Baltimore Convention Center
  • Status: post-meeting; verified recipient per ACMG Foundation PRNewswire pre-meeting announcement; lecture title and transcript TBD pending Digital Edition recording

Headline finding

Carey receives the 2026 David L. Rimoin Lifetime Achievement Award — the ACMG Foundation's highest honor, named for the founder of medical genetics as a clinical specialty. The citation recognizes a >40-year career spanning: creation/program-direction of the University of Utah Medical Genetics Training Program; >400 peer-reviewed articles; co-authorship of Medical Genetics and Genomics (now in its 6th edition); editorship of the American Journal of Medical Genetics (Editor-in-Chief, 2001–2016); and founding-professional-advisor role with SOFT, where Carey reshaped the clinical and ethical framing of trisomy 13 and 18 — moving the field from uniform non-intervention to individualized care.

Methodology / framework

Carey's contribution is clinical-genetics phenotype-first: detailed dysmorphology, longitudinal natural-history studies of underserved rare-disease populations (trisomy 13/18 most prominently), and the training-pipeline architecture (>40 years of fellows and residents) that built much of the current academic-medical-genetics workforce. The Rimoin Lecture is traditionally a career-arc keynote; specific 2026 lecture title TBD pending Digital Edition.

Legacy impact

Career arc. Carey's trajectory traces the institutionalization of clinical genetics from a 1970s sub-discipline into the present sub-specialty. Trained in pediatrics with sub-specialty in dysmorphology, Carey joined the University of Utah faculty in the late 1970s and built one of the longest-running ACGME-accredited Medical Genetics Training Programs in the country. The training-pipeline contribution — >40 cohorts of fellows and residents — is the legacy his peers most consistently cite, alongside the editorial-leadership stretch at the American Journal of Medical Genetics (Editor-in-Chief 2001–2016) where he shepherded thousands of clinical-genetics manuscripts into print.

Scholarly footprint. >400 peer-reviewed articles spanning dysmorphology, natural-history studies of rare-disease populations, neurofibromatosis (Carey was a longtime NF community leader), and the trisomy 13/18 work that reframed clinical management of these conditions. Co-authorship of Medical Genetics and Genomics (now in its 6th edition) made him a canonical textbook voice for two generations of medical-genetics trainees.

Advocacy and ethics. As founding professional/medical advisor to SOFT (Support Organization for Trisomy 13/18), Carey reshaped the ethical framing of these conditions — moving the field from uniform comfort-care-only recommendations toward individualized assessment that recognized longer survival in select infants receiving cardiac surgery and other interventions. This was a structural ethical shift, not a clinical-technique shift, and it propagated into NICU practice, palliative-care literature, and disability-studies scholarship.

Forward connection. The 2026 Rimoin Lecture is delivered against a backdrop where newborn-WGS, NIFS, and SF v3.3 reporting all touch the same pediatric-genetics ethical questions Carey spent four decades shaping. Whether his lecture engages those contemporary debates directly TBD pending Digital Edition recording.

Where it fits in the corpus

  • AACR 2026 / ASCO 2026: indirect — Carey's dysmorphology / pediatric-genetics framework underpins how cancer-predisposition syndromes (Li-Fraumeni, NF1, Beckwith-Wiedemann, DICER1, Costello, Noonan) are clinically recognized
  • ASHG 2026: William Allan Award / Curt Stern Award sibling lectures — career-recognition slot type
  • ESHG 2026: European clinical-genetics career-award parallels
  • Related ACMG 2026: presidential-plenary-nbs-expansion.md (same plenary block)

Open questions

  • Lecture title and core thesis — TBD pending Digital Edition recording
  • Whether Carey addresses the contemporary cancer-predisposition / NBS-expansion debates in his lecture, given his pediatric-genetics framing

Sources