Philosophy and Technology 32 (1):39-55 (2019)

Authors
Sebastian Schleidgen
Fernuniversität Hagen
Abstract
Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative focus group study at the National Center for Tumor Diseases. Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients’ prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, establishing independent governance entities in order to minimize the informational risks of genomic research, and implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research.
Keywords No keywords specified (fix it)
Categories No categories specified
(categorize this paper)
ISBN(s)
DOI 10.1007/s13347-017-0268-0
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 71,489
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

No references found.

Add more references

Citations of this work BETA

Ethischer Diskurs zu Epigenetik und Genomeditierung: die Gefahr eines (epi-)genetischen Determinismus und naturwissenschaftlich strittiger Grundannahmen.Karla Karoline Sonne Kalinka Alex & Eva C. Winkler - 2021 - In Boris Fehse, Ferdinand Hucho, Sina Bartfeld, Stephan Clemens, Tobias Erb, Heiner Fangerau, Jürgen Hampel, Martin Korte, Lilian Marx-Stölting, Stefan Mundlos, Angela Osterheider, Anja Pichl, Jens Reich, Hannah Schickl, Silke Schicktanz, Jochen Taupitz, Jörn Walter, Eva Winkler & Martin Zenke (eds.), Fünfter Gentechnologiebericht: Sachstand und Perspektiven für Forschung und Anwendung. Baden-Baden, Deutschland.: Nomos. DOI: 10.5771/9783748927242. pp. 299-323.

Add more citations

Similar books and articles

Challenges of Web-Based Personal Genomic Data Sharing.Pascal Borry & Mahsa Shabani - 2015 - Life Sciences, Society and Policy 11 (1):1-13.
Genomic Research Data: Open Vs. Restricted Access.David B. Resnik - 2010 - IRB: Ethics & Human Research 32 (1):1.

Analytics

Added to PP index
2019-04-08

Total views
12 ( #813,169 of 2,520,788 )

Recent downloads (6 months)
2 ( #270,509 of 2,520,788 )

How can I increase my downloads?

Downloads

My notes