As a child, I participated in a longitudinal study. That study led me to the field I'm in now, and I have the opportunity to potentially work with a dataset that has a high probability of containing my data from back then.

Since I happen to know my own gender, birthdate, and disease status, I could well identify myself if I got access.

Note that the PI that would be providing me access is not the PI whom I participated with.

Are there any issues with this? Or, are there any perceived issues that might worry someone involved? Do I have any obligation to disclose this?

1 Answer 1


I can think of two aspects that might be problematic depending on the exact details of the study:

  • If identifying your data would also allow you to identify anyone else's data, then clearly you having access to the dataset might violate someone else's privacy. This could happen if there is any familial data stored (e.g. in a twin study), or if experiments were conducted in smallish groups and you met the other participants in your group.
  • If the stored data include anything of a highly sensitive nature (e.g. information regarding disease susceptibility) then those running the study may want to have control over how that information is delivered to you, so that support can be provided in terms of correct interpretation or counselling. This would almost certainly have been discussed with you at the time of the original study (unless you were very young or did not have mental capacity for some reason) so it's likely to be a formality, but still worth disclosing.
  • To answer your concerns: 1) No, I couldn't identify anyone else. Everything was solo. 2) the nature of the disease is such that I would know whether I was affected by it. And yes, I was young enough to not understand at the time. Further, I could contact them and ask but I would really expect that the link between names and identifies has been destroyed by now! Sep 25, 2018 at 15:24

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