Organizations Towards "Big Data"-Driven Approaches in Personalized Medicine? An Empirical-Ethical Study in Health-Related IT

被引：1

作者：

Rauter, Carolin Martina ^{[1
]}

Woehlke, Sabine ^{[1
]}

Schicktanz, Silke ^{[1
]}

机构：

[1] Univ Med Ctr, Dept Med Eth & Hist Med, Humboldtallee 36, D-37073 Gottingen, Germany

来源：

ICT FOR HEALTH SCIENCE RESEARCH | 2019年 / 258卷

关键词：

Empirical Ethics; Patient Organization; Personalized Medicine; Big Data; Data Sovereignty; Trust;

D O I：

10.3233/978-1-61499-959-1-199

中图分类号：

TP [自动化技术、计算机技术];

学科分类号：

0812 ;

摘要：

Personalized medicine (PM) operates with sensitive biological data to optimize prevention and therapy. Therefore, ethical concerns by stakeholders such as patient organizations (POs) need to be reflected. We used an empirical-ethical approach including a website-analysis and 30 telephone-interviews for gaining in-depth insight into POs attitudes towards PM and Big Data. Three different types of stakeholder commitment can be derived from our data: 'Biomaterial donors' support research projects through tissue donation while 'financers' provide financial aid. The 'independent' keep control over their tissue donations and decide what it is used for. Our insights allow to shape future innovations in IT towards stakeholder's needs.

引用

页码：199 / 200

页数：2

共 20 条

[1] My Data, My Choice? – German Patient Organizations’ Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study
Carolin Martina Rauter
Sabine Wöhlke
Silke Schicktanz
Journal of Medical Systems, 2021, 45
[2] My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study
Rauter, Carolin Martina
Woehlke, Sabine
Schicktanz, Silke
JOURNAL OF MEDICAL SYSTEMS, 2021, 45 (04)
[3] Ethical challenges associated with health-related big data research
Ienca, M.
EUROPEAN JOURNAL OF PUBLIC HEALTH, 2019, 29
[4] A Visualization Model for Health-Related Big Data: Personalized Patient Contextualization After Kidney Transplantation
Rousseau, O.
Geffard, E.
Durand, A.
Giral, M.
Loupy, A.
Brouard, S.
Lefaucheur, C.
Morelon, E.
Couzi, L.
Kamar, N.
Le Quintrec, M.
Vince, N.
Limou, S.
Gourraud, P.
AMERICAN JOURNAL OF TRANSPLANTATION, 2023, 23 (06) : S584 - S584
[5] Towards a Paradigm Shift in Governing Data Access and Related Intellectual Property Rights in Big Data and Health-Related Research
Andanda, Pamela
IIC-INTERNATIONAL REVIEW OF INTELLECTUAL PROPERTY AND COMPETITION LAW, 2019, 50 (09) : 1052 - 1081
[6] “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore
Tamra Lysaght
Angela Ballantyne
Vicki Xafis
Serene Ong
Gerald Owen Schaefer
Jeffrey Min Than Ling
Ainsley J. Newson
Ing Wei Khor
E. Shyong Tai
BMC Medical Ethics, 21
[7] "Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore
Lysaght, Tamra
Ballantyne, Angela
Xafis, Vicki
Ong, Serene
Schaefer, Gerald Owen
Ling, Jeffrey Min Than
Newson, Ainsley J.
Khor, Ing Wei
Tai, E. Shyong
BMC MEDICAL ETHICS, 2020, 21 (01)
[8] Towards a Paradigm Shift in Governing Data Access and Related Intellectual Property Rights in Big Data and Health-Related Research
Pamela Andanda
IIC - International Review of Intellectual Property and Competition Law, 2019, 50 : 1052 - 1081
[9] Towards Principles-Based Approaches to Governance of Health-Related Research Using Personal Data
Laurie, Graeme
Sethi, Nayha
EUROPEAN JOURNAL OF RISK REGULATION, 2013, 4 (01) : 43 - 57
[10] Towards Design Guidelines for Effective Health-Related Data Videos: An Empirical Investigation of Affect, Personality, and Video Content
Sallam, Samar
Sakamoto, Yumiko
Leboe-McGowan, Jason
Latulipe, Celine
Irani, Pourang
PROCEEDINGS OF THE 2022 CHI CONFERENCE ON HUMAN FACTORS IN COMPUTING SYSTEMS (CHI' 22), 2022,

← 1 2 →