Risks of Identifying Individuals from Genome-Wide Association Studies
Author Information
Author(s): Andrew D. Johnson, Richard O'Donnell
Primary Institution: National Heart, Lung, and Blood Institute
Hypothesis
What are the risks of misuse related to privacy and confidentiality in genome-wide association studies?
Conclusion
The study highlights significant risks of misuse of individual participant data in genome-wide association studies, particularly concerning privacy and confidentiality.
Supporting Evidence
- Significant policy shifts have occurred due to privacy concerns raised by GWAS results.
- Controlled access models have been implemented to reduce risks of data misuse.
- 6.8% of studies may be at risk for misuse based on current guidelines.
Takeaway
This study looks at how sharing genetic data can sometimes accidentally reveal personal information about people, which can be a problem.
Methodology
A systematic survey of 643 GWAS articles published between November 2002 and July 1, 2010, assessing data availability and risks.
Potential Biases
Potential for misuse of individual participant data despite controlled access models.
Limitations
The study may overestimate the proportion of studies at risk since some classified as 'at potential risk' may have features that make misuse more difficult.
Participant Demographics
Studies included in the survey were published between 2002 and 2010, but specific demographics of participants were not detailed.
Statistical Information
P-Value
p<0.006
Statistical Significance
p<0.006
Digital Object Identifier (DOI)
Want to read the original?
Access the complete publication on the publisher's website