iiinova — where your digital self keeps evolving

Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 29/07/2026

INVITATION: Dr Scott Grosse presenting “Evidence Needs for Evaluating the Cost-Effectiveness of Adult Population Genomic Screening” 🗓️ Date: Thurs 10 Sept ⏰ Time: 4pm-5pm UTC 📍 Online, download the calendar invitation here: www.healtheconomics.org/event/eviden... We hope to see you there!

healtheconomics.org

Evidence Needs for Evaluating the Cost-Effectiveness of Adult Population Genomic Screening – International Health Economics Association

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 15/05/2026

New comment by @hadleyssmith.bsky.social is featured in Am J Bioeth! Personal Utility in #Healthcare System #Decision-Making: Addressing #Ethical Tensions Through Fit-for-Purpose Measurement Approaches Read More Here: buff.ly/c0cCFxO

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 14/05/2026

(1/4) TWO WEEKS TO GO: Biobanks & Genomics in LMICs – Emerging Opportunities for Research & Health Economics Webinar & Panel Discussion 🗓️ Wed 28 May ⏰ 8-9am UTC / 9-10am BST / 4-5pm CST 📍 Online, download the calendar invite here: healtheconomics.org/event/bioban...

healtheconomics.org

Biobanks and Genomics in Low- and Middle-Income Countries: Emerging Opportunities for Research and Health Economics Webinar & Panel Discussion – International Health Economics Association

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 30/03/2026

(1/4) INVITATION: Biobanks & Genomics in LMICs – Emerging Opportunities for Research & Health Economics Webinar & Panel Discussion 🗓️ Wed 28 May ⏰ 8-9am UTC / 9-10am BST / 4-5pm CST 📍 Online, download the calendar invite here: healtheconomics.org/event/bioban...

healtheconomics.org

Biobanks and Genomics in Low- and Middle-Income Countries: Emerging Opportunities for Research and Health Economics Webinar & Panel Discussion – International Health Economics Association

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 26/03/2026

(1/4) 2-WEEKS TO GO: Showcasing #ECR Research in #HealthEconomics – #BRCAScreening Webinar 🗓️ Thurs 9 Apr ⏰ 7-8am UTC / 8-9am BST / 3-4pm CST / 5-6pm AEST 📍 Online, download the calendar invite here: healtheconomics.org/event/showca...

healtheconomics.org

Showcasing ECR Research in Health Economics: BRCA Screening Webinar – International Health Economics Association

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 09/03/2026

(1/4) INVITATION: Showcasing #ECR Research in #HealthEconomics – #BRCAScreening Webinar 🗓️ Thurs 9 Apr ⏰ 7-8am UTC / 8-9am BST / 3-4pm CST / 5-6pm AEST 📍 Online, download the calendar invite here: healtheconomics.org/event/showca...

healtheconomics.org

Showcasing ECR Research in Health Economics: BRCA Screening Webinar – International Health Economics Association

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 17/12/2025

📣 Please complete a short survey nominating important or impactful 2025 papers for #healtheconomics in #genomics & #precisionmedicine. Top papers will be submitted for the #IHEA #ArrowAward. 🗓️ Deadline: 12 Jan 2026 🔗 q.surveys.unimelb.edu.au/jfe/form/SV_...

q.surveys.unimelb.edu.au

Qualtrics Survey | Qualtrics Experience Management

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 08/12/2025

🌟 Review highlights challenges &opportunities in using #genomics in #medicine. The authors call for agile, real-world data–driven evaluation strategies and a whole-system approach to integrate genomics equitably and sustainably in #healthcare. @hadleyssmith.bsky.social Read Here: buff.ly/An6N5wn

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 24/09/2025

(1/4) TWO-WEEKS: Webinar exploring distributional cost-effectiveness analysis (#DCEA) in #genomicmedicine 🗓️ Date & time: 6-7pm Wed 8 Oct EDT / 10-11pm Wed 8 Oct UTC / 9-10am Thurs 9 Oct AEDT 📍 Online, download the calendar invitation (+Zoom link) here: healtheconomics.org/event/advanc...

healtheconomics.org

Advancing Health Equity in Genomic Medicine through Distributional Cost-Effectiveness Analysis (DCEA) – International Health Economics Association

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 24/08/2025

#Duchennemusculardystrophy affects ~2 in 10,000 boys, yet #diagnosis in the U.S. still comes later, around age 5. #Newbornscreening can help catch #DMD earlier when #care & emerging #therapies can make the biggest difference. #RareDisease #Genomics #pediatric @hadleyssmith.bsky.social

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 26/08/2025

#Metachromatic #leukodystrophy (#MLD) is rare—1 in 100,000 births—but devastating if missed. A new two-tier #newbornscreen can catch it early, enabling #genetherapy that improves #survival & motor #outcomes. #pediatric #genomics #rarediseases @hadleyssmith.bsky.social Read More: buff.ly/qx2xQcx

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 14/08/2025

(1/4) INVITATION: Applying #MendelianRandomization in #HealthEconomics - Bridging #Genomics & #CostEffectiveness 🗓️ Tues 16 Sept ⏰8-9 AM UTC / 9-10 AM BST / 6-7 PM AEST 📍Online, download the calendar invite here: healtheconomics.org/event/applyi...

healtheconomics.org

Applying Mendelian Randomization in Health Economics – Bridging Genomics and Cost-Effectiveness – International Health Economics Association

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Hadley Stevens Smith @hadleyssmith.bsky.social · 18/08/2025

U.S. newborn screening is entering a new era, marked by the promise of genomic technologies and absence of a key national guidance committee. @mattmotta.bsky.social and I discuss recent events in the newborn screening policy space in a new JAMA Pediatrics Viewpoint. jamanetwork.com/journals/jam...

jamanetwork.com

Facing the Next Generation of US Newborn Screening

This Viewpoint discusses the critical role of the Advisory Committee on Heritable Disorders in Newborns and Children and the importance of continued national guidance to the future of US newborn scree...

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Hadley Stevens Smith @hadleyssmith.bsky.social · 07/08/2025

Interested in economic impacts of genomic medicine? Our iHEA Special Interest Group on economics of genomics would love to hear from you via the survey below!

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Hadley Stevens Smith @hadleyssmith.bsky.social · 06/08/2025

Do investigators have obligations to the relatives of genomic research participants who have a significant result? We explored cascade screening across the clinical-research divide in focus groups with clinicians, patient representatives, and ELSI scholars. www.gimopen.org/article/S294...

gimopen.org

When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research

Genetic results are important for both patients and their biological relatives. However, cascade screening (CS) uptake is low, especially when testing occurs through research programs and not clinical...

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 03/07/2025

New paper! @hadleyssmith.bsky.social and team's paper An end to #genetic exceptionalism: reframing the #ethics of #genomicsequencing for rapid #neonatal #diagnosis is featured in Semin Perinatol! Read More Here: buff.ly/Zh7Js2G

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Hadley Stevens Smith @hadleyssmith.bsky.social · 02/07/2025

Glad to see ACMG stepping up to support the continuation of evidence-based reviews to inform national newborn screening recommendations after termination of the federal advisory committee

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 27/06/2025

(1/6) Calling all Early Career Researchers & Health Economists interested in Genomics & Precision Medicine! The #IHEA Econ-Omics SIG invites you to our ECR Journal Club webinar: 🗓️ Tuesday, 15 July ⏰ 8-10am UTC | 9-11am BST | 6-8pm AEST 🔗 Register: healtheconomics.org/event/early-...

healtheconomics.org

Early Career Researcher (ECR) Journal Club – International Health Economics Association

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Hadley Stevens Smith @hadleyssmith.bsky.social · 24/06/2025

It was wonderful to have @sallysansom.bsky.social visit with us at @cherpdpm.bsky.social & the Precision Medicine Translational Research (PROMoTeR) Center and learn more about her work to advance rigor of patient-centered outcome measurement in #genomics and #raredisease!

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Hadley Stevens Smith @hadleyssmith.bsky.social · 01/06/2025

Considering using distributional cost-effectiveness analysis to evaluate a genomic medicine intervention? We specify a commonly used conceptual framework, the staircase of inequality, for the genomic medicine context. Read more here: urldefense.com/v3/__https:/...

urldefense.com

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 14/05/2025

We are excited to share that CHeRP fellow Ramesh Lamsal, PhD will be presenting at our next CHeRP Seminar on 5/19 at 1pm! He will present Beyond the #Patient: #Methods for Including #Family Spillovers in #Pediatric and #Maternal Cost-Utility #Analyses!

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Reposted by Hadley Stevens Smith

ELSIhub | CERA @elsihub.bsky.social · 18/04/2025

Join us on May 2 for an introduction to two types of NIH grants for research training and career development. We will cover the basics of the grant application process and explore the purpose of the K99/R00 and K01 awards. Register: ow.ly/4t4r50VCEhu

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 27/03/2025

New Publication! CHeRP faculty Hadley S. Smith and peers' paper #Rare #disease narratives on #socialmedia: A content #analysis is featured in Genetics in Medicine Open! Read More Here: buff.ly/2HZPBWN

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Hadley Stevens Smith @hadleyssmith.bsky.social · 23/03/2025

Looking forward to joining this panel at @asnpls.bsky.social to discuss findings from clinical and survey research studies in pediatric genomic medicine.

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 18/03/2025

(1/4) Attention Early Career Researchers (ECRs)! We are still collecting expressions of interest for our ECR ‘Preprint Club’ series for 2025. #IHEA #healtheconomics #genomics #precisionmedicine

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Reposted by Hadley Stevens Smith

STAT @statnews.com · 18/03/2025

The longtime director of the National Human Genome Research Institute is stepping down, as the larger NIH braces for more changes.

buff.ly

Eric Green is out as head of National Human Genome Research Institute

The longtime director of the National Human Genome Research Institute is stepping down, as the larger NIH braces for more changes.

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Hadley Stevens Smith @hadleyssmith.bsky.social · 17/03/2025

Grateful for the community and continuous career development opportunities that @smdm.bsky.social provides

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Hadley Stevens Smith @hadleyssmith.bsky.social · 12/03/2025

Taylor’s training was supported by an NIH Diversity Supplement to my R00, a program that aimed to increase research workforce diversity by supporting students, post-docs, and faculty from underrepresented backgrounds — and that no longer exists.

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Reposted by Hadley Stevens Smith

Gen Wojcik @genandgenes.bsky.social · 24/02/2025

In 2022, I participated in the important NHGRI Workshop "Future Directions in Genomics & Health Equity Research". The program & accompanying materials were available online. They are now gone. This makes me so sad, especially for our wonderful colleagues at NIH who care about this work deeply.

Screenshot of website from January 19th, 2025 of meeting summary. Event details say "The National Human Genome Research Institute (NHGRI) will host a virtual workshop entitled “Future Directions in Genomics and Health Equity Research” on April 6-7. The goal of the workshop is to identify research gaps and opportunities that will help to decrease health disparities and improve health equity in genomics. The workshop will emphasize the scientific value of diversity and inclusion as well as identify and prioritize future research needs in genomics to advance health equity. It will also explore best practices for making genomic data, technology and genomically informed healthcare ethical, representative, accessible and beneficial to all."

Screenshot of the same URL today (February 23rd, 2025). It simply says "404 - Page Not Found" and "The link you followed or typed is either incomplete, outdated or we have made a mistake! Please search above or see these helpful links instead"

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Reposted by Hadley Stevens Smith

Adrianna McIntyre @adrianna.bsky.social · 14/02/2025

Terrific interactive showing the broad reach of these cuts. Baylor College of Medicine in TX stands to lose more ($57M) than Harvard Medical School ($34M). Vanderbilt University Medical Center & UT Southwestern Medical Center stand to lose more ($71M & $57M) than Sloan-Kettering in NY ($54M).

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Reposted by Hadley Stevens Smith

The Division of Child Health Research and Policy @cherpdpm.bsky.social · 11/02/2025

The Division of #ChildHealth #Research and #Policy (CHeRP) is now on BlueSky! Follow us to learn more about our recent work, guest speakers and published articles! For more info on our work, visit: www.populationmedicine.org/research/CHe...

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 13/01/2025

(1/2) Reminder: Next month Professor Katherine Payne from the University of Manchester will present on generating economic evidence to understand the potential impact of pharmacogenetic testing #IHEA #healtheconomics #pharmacogenetics healtheconomics.org/event/econ-o...

healtheconomics.org

Econ-Omics Talks: Evaluating and Valuing Pharmacogenetic Testing – International Health Economics Association

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 05/12/2024

(1/6) Attention Early Career Researchers (ECRs): We have slightly altered the application criteria for our ECR ‘Preprint Club’ series for 2025. #IHEA #healtheconomics #genomics #precisionmedicine

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Reposted by Hadley Stevens Smith

CEVR @tuftscevr.bsky.social · 04/12/2024

Calling all health economists! The Tufts-CEVR Cost-Effectiveness Analysis Paper of the Year Contest is back! Submit your paper on cost-effectiveness analysis for a chance to win $500. Deadline: January 31, 2024. Don't miss out! Learn more & apply: tinyurl.com/yskfm9us #HEOR #CEA

cevr.tuftsmedicalcenter.org

Call for Papers: 2024 Tufts-CEVR Cost-Effectiveness Analysis Paper of the Year - Center for the Evaluation of Value and Risk in Health

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Reposted by Hadley Stevens Smith

Centre for Personalised Medicine @cpmoxford.bsky.social · 26/11/2024

A mere starting point, we're sure. Please use, and add to. go.bsky.app/KuUsm35

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Reposted by Hadley Stevens Smith

IHEA Econ-Omics SIG @ihea-econ-omics.bsky.social · 27/11/2024

Meet our team! @hadleyssmith.bsky.social & Samantha Pollard are the research and international collaboration conveners of the IHEA Economics of Genomics & Precision Medicine Special Interest Group (i.e., the Econ-Omics SIG). #healtheconomics #genomics #precisionmedicine

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Reposted by Hadley Stevens Smith

Johns Hopkins Berman Institute of Bioethics @bermaninstitute.bsky.social · 27/11/2024

Regulatory Processes for Rare Disease Drugs in the United States and European Union: Flexibilities and Collaborative Opportunities - Editors: Jeffrey Kahn, Carson Smith, Tequam Worku, and Carolyn Shore | The National Academies Press nap.nationalacademies.org/catalog/2796...

nap.nationalacademies.org

Regulatory Processes for Rare Disease Drugs in the United States and European Union: Flexibilities and Collaborative Opportunities

Read online, download a free PDF, or order a copy in print or as an eBook.

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Reposted by Hadley Stevens Smith

Johns Hopkins Berman Institute of Bioethics @bermaninstitute.bsky.social · 25/11/2024

Are you an undergraduate interested in exploring ethical issues in health and medicine? Learn more about our summer '25 internship experience in genomics & bioethics! Choose among 2 upcoming zoom info sessions, get your questions answered by the program faculty & coordinator. 🧵

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Reposted by Hadley Stevens Smith

ELSIhub | CERA @elsihub.bsky.social · 21/11/2024

In this seventh installment of the ELSI Abroad series, CERA spoke with Ilhak Lee, MD, PhD, and Hannah Kim, MD, PhD, about ELSI research in South Korea elsihub.org/news/elsi-ab...

elsihub.org

ELSI Abroad: Spotlight on South Korea

In this seventh installment of the ELSI Abroad series, CERA spoke with Ilhak Lee, M.D., Ph.D., and Hannah Kim, M.D., Ph.D., about ELSI research in South Korea. Professor Lee and Professor Kim are coll...

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Reposted by Hadley Stevens Smith

Columbia Ethics @columbiaethics.bsky.social · 21/11/2024

New NASEM Report: Sustaining Community Engagement in Genomics Research: Proceedings of a Workshop. Division of Ethics Chief Sandra Soo-Jin Lee served as co-chair of the workshop committee. www.mhe.cuimc.columbia.edu/news/sustain...

mhe.cuimc.columbia.edu

Sustaining Community Engagement in Genomics Research

NASEM recently published the report Sustaining Community Engagement in Genomics Research: Proceedings of a Workshop—in Brief, a response to pressing challenges in the field.

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Reposted by Hadley Stevens Smith

Australian Genomics @ausgenomics.bsky.social · 21/11/2024

📣 Today the World Health Organization's #Genomics Program launched its new principles for the ethical human genome data collection, access, use and sharing. 🌎🧬 Read more & access the full document here 👉 www.who.int/news/item/20... #WHO#globalhealth #data #equity #collaboration #research

who.int

WHO releases new principles for ethical human genomic data collection and sharing

The World Health Organization (WHO) has issued a set of principles for the ethical collection, access, use and sharing of human genomic data. Created with guidance from the WHO Technical Advisory Grou...

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