| 36738469 | Moving away from one disease at a time: Screening, trial design, and regulatory implications of novel platform technologies. | Am J Med Genet C Semin Med Genet | 2023 |
| 37470117 | Integrating Genomics Into Pediatric Health Care: The Long Road Ahead. | Pediatrics | 2023 |
| 37204146 | Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care. | Am J Bioeth | 2023 |
| 36448938 | Scaling genetic resources: New paradigms for diagnosis and treatment of rare genetic disease. | Am J Med Genet C Semin Med Genet | 2023 |
| 36445952 | North American genetic counselors' approach to collecting and using ancestry in clinical practice. | J Genet Couns | 2023 |
| 36688577 | Gene-targeted therapies: Towards equitable development, diagnosis, and access. | Am J Med Genet C Semin Med Genet | 2023 |
| 35062937 | Lived experiences of individuals with cystic fibrosis on CFTR-modulators. | BMC Pulm Med | 2022 |
| 36412585 | Parental Depression and Anxiety Associated with Newborn Bloodspot Screening for Rare and Variable-Onset Disorders. | Int J Neonatal Screen | 2022 |
| 35938011 | Population-Based Screening of Newborns: Findings From the NBS Expansion Study (Part One). | Front Genet | 2022 |
| 36055208 | Addressing underrepresentation in genomics research through community engagement. | Am J Hum Genet | 2022 |
| 36258039 | How collaboration between bioethicists and neuroscientists can advance research. | Nat Neurosci | 2022 |
| 35256804 | A call for an integrated approach to improve efficiency, equity and sustainability in rare disease research in the United States. | Nat Genet | 2022 |
| 35225933 | Genomics and Newborn Screening: Perspectives of Public Health Programs. | Int J Neonatal Screen | 2022 |
| 33420343 | "It seems like COVID-19 now is the only disease present on Earth": living with a rare or undiagnosed disease during the COVID-19 pandemic. | Genet Med | 2021 |
| 33847522 | Ethical Challenges for Pediatric Biobanks. | Biopreserv Biobank | 2021 |
| 33502079 | Digital peer-to-peer information seeking and sharing: Opportunities for education and collaboration in newborn screening. | Am J Med Genet C Semin Med Genet | 2021 |
| 34806961 | "If It's Ethical During a Pandemic⿦": Lessons from COVID-19 for Post-Pandemic Biobanking. | Am J Bioeth | 2021 |
| 34096144 | Prenatal genetic counselors' perceptions of the impact of abortion legislation on counseling and access in the United States. | J Genet Couns | 2021 |
| 34166724 | The future of newborn screening for lysosomal disorders. | Neurosci Lett | 2021 |
| 32342755 | Online Pediatric Research: Addressing Consent, Assent, and Parental Permission. | J Law Med Ethics | 2020 |
| 33157006 | Analogies in Genomics Policymaking: Debates and Drawbacks. | Am J Hum Genet | 2020 |
| 33023977 | Public involvement in the governance of population-level biomedical research: unresolved questions and future directions. | J Med Ethics | 2020 |
| 32242760 | Comparison of Video, App, and Standard Consent Processes on Decision-Making for Biospecimen Research: A Randomized Controlled Trial. | J Empir Res Hum Res Ethics | 2020 |
| 32533133 | The limited use of US residual newborn screening dried bloodspots for health disparity research. | Genet Med | 2020 |
| 30467403 | Experiences and perspectives on the return of secondary findings among genetic epidemiologists. | Genet Med | 2019 |
| 31719122 | Considering Equity in Assessing Familial Benefit From the Return of Genomic Research Results. | Pediatrics | 2019 |
| 33072981 | A Newborn Screening Education Best Practices Framework: Development and Adoption. | Int J Neonatal Screen | 2019 |
| 30100612 | Including ELSI research questions in newborn screening pilot studies. | Genet Med | 2019 |
| 30792497 | Correction: Experiences and perspectives on the return of secondary findings among genetic epidemiologists. | Genet Med | 2019 |
| 30908831 | Exploring prenatal genetic counselors' perceptions of abortion laws in restrictive states. | J Genet Couns | 2019 |
| 30994072 | A Belmont Reboot: Building a Normative Foundation for Human Research in the 21st Century. | J Law Med Ethics | 2019 |
| 30676903 | Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism. | Am J Bioeth | 2019 |
| 29621469 | Misplaced Trust: Building Research Relationships in the Age of Biorepository Networks. | Am J Bioeth | 2018 |
| 33072932 | Duchenne Muscular Dystrophy Newborn Screening, a Case Study for Examining Ethical and Legal Issues for Pilots for Emerging Disorders: Considerations and Recommendations. | Int J Neonatal Screen | 2018 |
| 30242814 | What Precision Medicine Can Learn from Rare Genetic Disease Research and Translation. | AMA J Ethics | 2018 |
| 30133723 | Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies. | Hastings Cent Rep | 2018 |
| 29949895 | Willingness to Participate in a National Precision Medicine Cohort: Attitudes of Chronic Kidney Disease Patients at a Cleveland Public Hospital. | J Pers Med | 2018 |
| 28661748 | Modernizing Research Regulations Is Not Enough: It's Time to Think Outside the Regulatory Box. | Am J Bioeth | 2017 |
| 28338850 | Photo-documentation in the community: reflections on genetics, health and health disparities. | Int J Epidemiol | 2017 |
| 28222731 | Genomic newborn screening: public health policy considerations and recommendations. | BMC Med Genomics | 2017 |
| 29430401 | Ethical issues related to clinical research and rare diseases: 15th Gordon L. Snider Critical Issues Workshop, April 1, 2016, Bethesda, Maryland. | Transl Sci Rare Dis | 2017 |
| 29073807 | An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots. | J Empir Res Hum Res Ethics | 2017 |
| 27043416 | Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial. | JAMA Pediatr | 2016 |
| 29754545 | Ethical and legal considerations for pediatric biobank consent: current and future perspectives. | Per Med | 2016 |
| 27586542 | Biobank participant support of newborn screening for disorders with variable treatment and intervention options. | J Community Genet | 2016 |
| 26833040 | Evaluating Harms in the Assessment of Net Benefit: A Framework for Newborn Screening Condition Review. | Matern Child Health J | 2016 |
| 25597748 | Communicating with biobank participants: preferences for receiving and providing updates to researchers. | Cancer Epidemiol Biomarkers Prev | 2015 |
| 26331182 | Biobanking Research and Human Subjects Protections: Perspectives of IRB Leaders. | IRB | 2015 |
| 26564943 | Investigator Experiences and Attitudes About Research With Biospecimens. | J Empir Res Hum Res Ethics | 2015 |
| 26479566 | Return of Results from Research Using Newborn Screening Dried Blood Samples. | J Law Med Ethics | 2015 |