Navigating the Ethics of Medical Information Reuse
When Your Medical Records Take on a Second Life
Direct patient care during medical visits
Research, public health, innovation
"The concepts of anonymisation and consent are problematic for Big Data, in that it is implausible to suggest that anonymisation can be robust without further qualification and a mistake to believe that consent guarantees autonomy" 1
Using health information beyond original collection purposes
Alignment between secondary uses and original purposes
What ordinary people expect to happen with their data 6
Struggle with big data research due to iterative novelty and evolving applications 4
Emphasizes interconnectedness and willingness to "carry costs on behalf of others" 1
Institutions as responsible stewards maximizing data value for societal benefit 6
Grounds data sharing in what ordinary people would expect 6
Denmark's universal healthcare system with mandatory electronic health records and personal identifier system 2
| Work Type | Description | Impact |
|---|---|---|
| Production Work | Documenting clinical information in structured formats | Requires time and expertise for future usability 2 |
| Completion Work | Adding data for non-clinical purposes | Diverts attention from patient care 2 |
| Validation Work | Ensuring data quality for unknown contexts | Requires medical expertise for accuracy 2 |
| Sorting Work | Separating information by use cases | Creates cognitive load and error potential 2 |
| Recontextualization | Maintaining meaning across contexts | Essential to prevent misinterpretation 2 |
The ethical reuse of health data represents both tremendous opportunity and significant responsibility. The invisible life of medical information involves complex trade-offs between individual privacy and collective benefit.
Acknowledge invisible data work by healthcare professionals 2
Develop mechanisms adaptable to evolving technologies 8
Foster dialogue through transparent practices 6
The journey of health data beyond the clinic doesn't have to be a story of privacy erosion. Through careful ethical stewardship, it can become a story of scientific discovery, improved healthcare, and responsible innovation.