Invited Talks Given by Lab Members Internationally
Spectrum Health and Michigan State University, Grand Rapids, MI, September 23, 2005.
"How should researchers and administrators think about privacy
when constructing a longitudinal, large-scale person-specific research database
across medical, educational, and public service venues?"
Constructing such a community-wide database that is minimally invasive
to privacy while also linking birth information, school records,
public services, and medical data over time is problematical.
Issues include: the nature of the entity that would hold and govern
the resulting database,
its specific research purposes, the fact that the database is assembled
from data collected for other purposes, the assortment of regulations
(e.g., public health laws, HIPAA, FERPA, state law) that would apply,
and the disparity between the beneficiaries (researchers and research dollars)
and the subjects of the data (e.g., low income women and children, who receive
no direct personal benefit). While the privacy issues are large, complex
and diverse, methods based on consent and/or anonymity are crucial
to identifying solutions in which the resulting database is provably
minimally invasive to privacy while remaining practically useful.
This talk will examine these issues in detail, define privacy risks
using real-world examples, and explore methods for constructing large-scale
databases having provable guarantees of privacy protection
while allowing information to be widely shared.
References and Related Links