The forgotten 50 per cent

By Sarah RaparoliLex KlerenMisch Pautsch Switch to German for original article

When data is missing, it not only creates a misrepresentation of scientific information, but also a distortion of the lives we all participate in. The gender data gap refers to a gender-related gap in data collection that can have negative consequences in several areas.

Apersonal insight into the research: this text has been in the planning stages for over a year. Not because the research or drafting was so time-consuming, but because seemingly no one wanted to talk to me about this issue, let alone had the problem on their radar. I had already conducted two interviews over a year ago. One was with a director of studies at the University of Luxembourg. Although I had – on request – sent some of them my questions in advance, he made it clear during our conversation that he was neither prepared nor did he know what I wanted to talk about. During the interview, I asked him a few times because I was not sure – or did not want to believe – that he really understood my questions. I left his office frustrated and questioning myself. "Is it not as big an issue as I assume? Am I too much in my little bubble and do not realise that it is not that important to talk and write about it?" were the questions that preoccupied me at the time.

The many posts from international media – and because the topic came up again in the editorial office – reinforced my belief that I was on the right track. "In medicine, men are the norm. That means for women: Misdiagnoses, wrong medication, and possibly higher mortality rates", wrote Fluter in June 2021. "Women are often forgotten or ignored when data is collected. The lack of consideration of gender differences in data collection is a subtle form of discrimination and can have fatal consequences for women", wrote Human Rights from Switzerland, also in June last year. What is meant is the gender data gap. Most people will be familiar with the gender pay gap, i.e. the difference between the average gross hourly wage of the sexes. Briefly, the gender data gap describes the lack of representation of data on a particular gender. This creates distortions in various areas, since vital information, which can be relevant not only medically but also economically or socially, is missing due to incomplete data collection.

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