Emily Willingham writes:
A familiar scenario: As part of having your cholesterol checked, your clinician also orders a standard blood panel — a red blood-cell count, and then a breakdown showing the proportions of five types of white blood cells. Less familiar: Your cholesterol is fine (congratulations), but the white blood-cell counts are off, with values that could mean something fairly mild, such as a viral infection, or point to a serious, potentially fatal problem, such as cancer. Would you want your clinician to tell you about this abnormal finding?
If you said “yes,” then you are expressing your right to know about the result. If you said “no,” then you are expressing the opposite: the right not to know. In most cases, the clinician would tell the patient about such an abnormal finding and discuss it. But what if the finding turned up in samples donated for medical research instead of taken for medical testing?
That’s exactly what’s happened in Iceland.
Read more on Aeon. This article touches on a lot of hugely important privacy issues that will only become more pressing as more people decide to do genetic testing, or the government decides that researchers can use our data without necessarily obtaining informed opt-in consent for a particular study and the results of it.