Wednesday, May 19, 2004
| Topic: |
The Use of Patient Data Without Consent |
| Presenter: |
Matthew Allison, M.D., M.P.H.,
UCSD |
| Location: |
Medical Teaching Facility (MTF) 175 |
Discussion
Questions: |
- What motivates medical data mining? What can we learn from such data?
- What ethical issues does medical data mining raise?
- How do The Declaration of Helsinki and The Belmont Report bear on the question of medical data mining?
- What issues of privacy and confidentiality does research using such data raise?
- Does the storage of individual genetic information present special issues?
- What Institutional requirements govern research using existing patient data without consent? How good are these requirements in protecting patient rights?
- In what respects is data mining in a medical setting the same as, or different from, what airline companies and the federal government do for security purposes?
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Discussion
Summary: |
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| Readings: |
- World Medical Association Declaration Of Helsinki - Ethical Principles for Medical Research Involving Human
- The Belmont Report - Ethical Principles and Guidelines for the Protection of Human Subjects of Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research
- UCSD HRPP Criteria for Waiver of Informed Consent
- Cios KJ and Moore GW. Uniqueness of medical data mining. Artificial Intelligence in Medicine. 2002; 26, 1-24.
- Berman JJ. Confidentiality Issues for Medical Data Miners. Artificial Intelligence in Medicine. 2002; 26, 25-36.
- Robertson JA. The $1000 Genome: Ethical and Legal Issues in Whole Genome Sequencing of Individuals. AM J Bioethics. 2003; 3, W35 - 42.
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