Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research

Sebastian Schleidgen, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Christof von Kalle, Eva C. Winkler

Research output: Contribution to journalArticle

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 (NCT). 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 (1) comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, (2) establishing independent governance entities in order to minimize the informational risks of genomic research, and (3) implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research.

Original languageEnglish (US)
Pages (from-to)39-55
Number of pages17
JournalPhilosophy and Technology
Volume32
Issue number1
DOIs
StatePublished - Mar 15 2019

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Disclosure
Physicians
Entity
Governance
Sound
Informed Consent
Oncology
Risk Assessment
Guidance
Focus Groups
Cancer
Decision Making

Keywords

  • Data misuse
  • Data sharing
  • Genomic research
  • Policy making
  • Risk assessment
  • Risk of re-identification

ASJC Scopus subject areas

  • Philosophy
  • History and Philosophy of Science

Cite this

Between Minimal and Greater Than Minimal Risk : How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research. / Schleidgen, Sebastian; Husedzinovic, Alma; Ose, Dominik; Schickhardt, Christoph; von Kalle, Christof; Winkler, Eva C.

In: Philosophy and Technology, Vol. 32, No. 1, 15.03.2019, p. 39-55.

Research output: Contribution to journalArticle

Schleidgen, Sebastian ; Husedzinovic, Alma ; Ose, Dominik ; Schickhardt, Christoph ; von Kalle, Christof ; Winkler, Eva C. / Between Minimal and Greater Than Minimal Risk : How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research. In: Philosophy and Technology. 2019 ; Vol. 32, No. 1. pp. 39-55.
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