Taking data protection too far: the mysterious case of W115

W115

Congratulations to Dr Henne Holstege and her team at the VU (Vrije Universiteit Amsterdam) Medical Center for sequencing the genetic code of the world’s oldest woman, Hendrikje van Andel-Schipper, who died in 2005 at the age of 115.

According to this weekend’s newspapers, Dr Holstege announced this achievement at the International Congress of Human Genetics in Montreal, Canada last week, but declined to name the individual, referring to her only as W115.

This may be an extreme example of attempted compliance with the EU Data Protection Directive (or national laws based thereon) by using anonymised codes in place of patient names.  Data protection legislation prohibits the disclosure of personal data about an individual (although, from memory, IP Draughts is not sure the rules apply to dead people).  A common technique in clinical trials of a new medicine, in order to avoid identifying individuals, is to allocate code names to each patient who is the subject of the trial.

M115

If that is the reason why the code name W115 was used in this case, it is a good illustratration that using such codes doesn’t necessarily achieve compliance with data protection rules.  In this case, it is easy for a journalist to identify the “patient”, if other information about her (the world’s oldest woman; genome studied in a Dutch hospital) is known.

We have been involved in advising on clinical trials for small and distinct patient sets, where similar concerns arise, and where additional precautions may need to be taken to avoid disclosing data that could identify the patient.

1 Comment

Filed under Confidentiality, News

One response to “Taking data protection too far: the mysterious case of W115

  1. Jill

    According to the ICO, “if an individual is dead then their personal information is no longer covered by the Act, however, you might wish to consider whether any duty of confidence requires you to keep any of their personal information confidential.”

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s