Data stewardship in FTLD research: Investigator and research participant views

被引：0

作者：

Arias, Jalayne J. ^{[1
,2
]}

Tyler, Ana M. ^{[1
]}

Beskow, Laura M. ^{[3
]}

Carillo, Maria C. ^{[4
]}

Dickinson, Susan ^{[5
]}

Goldman, Jill ^{[6
]}

Majumder, Mary A. ^{[7
]}

Mello, Michelle M. ^{[8
,9
]}

Snyder, Heather M. ^{[4
]}

Yokoyama, Jennifer S. ^{[1
,10
]}

机构：

[1] Univ Calif San Francisco, Weill Inst Neurosci, Dept Neurol, Memory & Aging Ctr, San Francisco, CA USA

[2] Georgia State Univ, Sch Publ Hlth, Dept Hlth Policy & Behav Sci, 140 Decatur St SE, Atlanta, GA 30303 USA

[3] Vanderbilt Univ, Ctr Biomed Eth & Soc, Med Ctr, Nashville, TN USA

[4] Alzheimers Assoc, Div Med & Sci Relat, Chicago, IL USA

[5] Assoc Frontotemporal Degenerat, King Of Prussia, PA USA

[6] Columbia Univ, Neurol Inst, Irving Med Ctr, New York, NY USA

[7] Baylor Coll Med, Ctr Med Eth & Hlth Policy, Houston, TX USA

[8] Stanford Univ, Stanford Law Sch, Palo Alto, CA USA

[9] Stanford Univ, Dept Med, Palo Alto, CA USA

[10] Univ Calif San Francisco, Dept Radiol & Biomed Imaging, San Francisco, CA USA

来源：

ALZHEIMERS & DEMENTIA | 2024年 / 20卷 / 04期

关键词：

data sharing; ethics; frontotemporal lobar degeneration; policy/law; research;

D O I：

暂无

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

INTRODUCTION: Federal policies and guidelines have expanded the return of individual results to participants and expectations for data sharing between investigators and through repositories. Here, we report investigators' and study participants' views and experiences with data stewardship practices within frontotemporal lobal degeneration (FTLD) research, which reveal unique ethical challenges. METHODS: Semi-structured interviews with (1) investigators conducting FTLD research that includes genetic data collection and/or analysis and (2) participants enrolled in a single site longitudinal FTLD study. RESULTS: Analysis of the interviews identified three meta themes: perspectives on data sharing, experiences with enrollment and participation, and data management and security as mechanisms for participant protections. DISCUSSION: This study identified a set of preliminary gaps and needs regarding data stewardship within FTLD research. The results offer initial insights on ethical challenges to data stewardship aimed at informing future guidelines and policies.

引用

页码：2886 / 2893

页数：8

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[1] Data stewardship in FTLD research: Investigator and research participant views
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Tyler, Ana M.
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