“I Have Fought for so Many Things”: Disadvantaged families’ Efforts to Obtain Community-Based Services for Their Child after Genomic Sequencing-Reference-Cited by-同舟云学术

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“I Have Fought for so Many Things”: Disadvantaged families’ Efforts to Obtain Community-Based Services for Their Child after Genomic Sequencing

Published:2023-05-10 Issue:4 Volume:14 Page:208-217
ISSN:2329-4515
Container-title:AJOB Empirical Bioethics
language:en
Short-container-title:AJOB Empirical Bioethics

Author:

Ackerman Sara L.¹²³^ORCID,Brown Julia E.H.¹³,Zamora Astrid¹⁴,Outram Simon¹²³

Affiliation:

1. Program in Bioethics, University of California San Francisco, San Francisco, California, USA

2. Department of Social & Behavioral Sciences, University of California San Francisco, San Francisco, California, USA

3. Institute for Health & Aging, University of California San Francisco, San Francisco, California, USA

4. Department of Nutritional Sciences, University of Michigan, Ann Arbor, Michigan, USA

Funder

National Human Genome Research Institute

Publisher

Informa UK Limited

Subject

Health Policy,Philosophy,Health (social science)

Link

https://www.tandfonline.com/doi/pdf/10.1080/23294515.2023.2209747

Reference41 articles.

1. The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations

2. Caregiving Experiences of Latino Families With Children With Autism Spectrum Disorder

3. “Let’s Just Wait Until She’s Born”: Temporal Factors That Shape Decision-Making for Prenatal Genomic Sequencing Amongst Families Underrepresented in Genomic Research

4. Whose Odyssey Is It? Family-Centered Care in the Genomic Era

5. Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

Cited by 5 articles. 订阅此论文施引文献订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献

1. Experts' Views on Children's Access to Community-Based Therapeutic and Education Services After Genomic Sequencing Results;Journal of Developmental & Behavioral Pediatrics;2024-07-10

2. Genomic Answers for Kids: Toward more equitable access to genomic testing for rare diseases in rural populations;The American Journal of Human Genetics;2024-05

3. Parental Experiences of Genetic Testing;NeoReviews;2024-03-01

4. Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit;Ethics & Human Research;2024-01

5. Using visual storytelling to share aggregate findings with families participating in clinical genomics research;Genetics in Medicine Open;2024

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