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.
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.