Organ donors can simply register at the DMV, but what about data donors? When we pass away privacy laws protect our personal data from being distributed. The major downside to this is big data research projects are hindered. An example would be searching for patterns around shift work, premature aging, cancer and sleep impairment to name a few topics of interest. Scientific America reposted a story from The Conversation proposing how to deal with data after death.
As researchers in medicine and ethics, we have found the rules governing data sharing in several countries to be inadequate. We think countries should create national databases of data donors, which could be used both for living patients to control how their medical data are used and shared, and for them to indicate whether they wish to continue sharing data after death.
People should be able to indicate which type of projects they wish to share data with, which parts of their medical records they are happy to share and whether they are willing to share data in a nonanonymized manner. They should also be able to give “broad consent” to future use of data if they wish.
Data donation after death should be discussed to avoid data dying along with patients, in turn leading to other deaths by setting back medical science.
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