The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities

S Iyer, K Maxson Jones, JO Robinson, NR Provenza… - eLife, 2024 - elifesciences.org
In this paper, we provide an overview and analysis of the BRAIN Initiative data-sharing
ecosystem. First, we compare and contrast the characteristics of the seven BRAIN Initiative …

Avoiding liability and other legal land mines in the evolving genomics landscape

EW Clayton, AM Tritell… - Annual Review of …, 2023 - annualreviews.org
This article reviews evolving legal implications for clinicians and researchers as genomics is
used more widely in both the clinic and in translational research, reflecting rapid changes in …

Payer reimbursement practices and incentives for improving interpretation of germline genetic testing

P Deverka, J Geary, C Mathews… - Journal of Law and …, 2023 - academic.oup.com
Germline genetic testing for inherited cancer risk has shifted to multi-gene panel tests
(MGPTs). While MGPTs detect more pathogenic variants, they also detect more variants of …

Policy options to facilitate cancer genomic variant data sharing: outcomes of a modified policy Delphi

JO Robinson, A Daoud, J Geary… - Journal of Law and …, 2023 - academic.oup.com
Sharing cancer gene variant and relevant clinical data could accelerate progress in cancer
genomics. However, data sharing is currently impeded by issues related to financial …

Introduction: sharing data in a medical information commons

R Cook-Deegan, MA Majumder… - The Journal of Law …, 2019 - journals.sagepub.com
In 2011, the US National Academies published a report that called for an “Information
Commons” and “Knowledge Network” to enhance understanding of disease and normal …

[图书][B] Consumer genetic technologies: ethical and legal considerations

IG Cohen, NA Farahany, HT Greely, C Shachar - 2021 - books.google.com
Liability implications of direct-to-consumer genetic testing/Gary E. Marchant, Mark Barnes,
Ellen W. Clayton, and Susan M. Wolf--Consuming genetics as a life insurance …

[PDF][PDF] Sorry you asked? Mayo, Myriad, and the battles over patent-eligibility

R Cook-Deegan, J Geary, K Hapke… - Journal of Law and …, 2024 - academic.oup.com
Genetic testing for inherited cancer risk changed dramatically when the US Supreme Court
handed down unanimous rulings in Mayo v. Prometheus (2012) and Myriad v. Association …

Physician-reported patient involvement and treatment decisions in first-line ovarian cancer in the USA and Europe

KN Moore, MR Mirza, C Gourley, S Pignata… - International journal of …, 2024 - Elsevier
Objectives Real-world data evaluating how approvals of novel treatment regimens for
ovarian cancer have impacted the treatment paradigm, including first-line maintenance, are …

A proposed framework for patient engagement throughout the broader research enterprise

CL Strassle, SD Pearson - Journal of Comparative …, 2020 - becarispublishing.com
Patient engagement in clinical research refers to the involvement of patients beyond the role
of research subject. To date, the goals of patient engagement have not been clearly defined …

Regulatory and medical aspects of DTC genetic testing

CM Sharkey, X Wu, MF Walsh, K Offit - … Technologies: Ethical and …, 2021 - papers.ssrn.com
Abstract The recent Food and Drug Administration (FDA) marketing authorizations granted
for testing mutations associated with hereditary breast and colon cancer, as well as …