Privacy, proportionality, and legitimate purposes
All legislative proposals that include the processing of personal data should (in Sweden) be analysed from a privacy perspective. Privacy analysis is an assessment of whether the consequences of the personal data processing are necessary and proportionate. Examples of questions from an ethical and political-philosophical point of view include: What are "purposes that are acceptable in a democratic society?", What are "goals of general interest”?,
How do different proposals for increased and/or expanded data sharing fare regarding such objectives?, Are there tensions between short-term good and long-term good?
Arguments against increased and/or expanded opportunities for data sharing include counterproductive behaviour from citizens, decreased trust in authorities, and "The three M's": Misuse, mistakes, misjudgements. Moreover, additive and cumulative effects could compromise proportionality.
Different ethical and political-philosophical aspects need to be included when proposals for increased and/or expanded data sharing are analysed. Further research is needed on the effects on trust of increased and/or expanded data sharing, and on how proportionality assessments have been and should be done (in relation to which values and why).
5.3. Ethical issues in using diverse data when studying LGBTIQ+ experiences
Riikka Taavetti, University Lecturer, University of Turku and Outi Lepola, Postdoctoral Researcher, University of Turku
When LGBTIQ+ issues are addressed with surveys intended for the wider population, there tends to be relatively few LGBTIQ+ respondents. As a result, especially if multiple options are given for defining one’s gender and sexuality, the groups become too small to be addressed in the analysis.
A common solution to having few respondents is to combine diverse groups in the analysis, for example grouping gender and sexual minorities together. However, the issues these groups face are rather different, and the grouping may, in fact, be misleading. Utilizing broader terms or acronyms as LGBTIQ+ may also create the problem of false inclusivity. As an example, does the study actually involve anything on, e.g., intergender people? Another issue is who are addressed with their own letters in the acronym and who are included in the ‘+’?
One option to utilize survey data of even very few LGBTIQ+ respondents is to analyse it with a more qualitative approach on quantitative material. For example, this can mean analysis of single survey answers, including seemingly impossible combinations or rare answers. These methods can offer perspectives to what the survey was not able to cover and can also highlight the implicit assumptions in the survey.
What is considered as sensitive
In ethical evaluation of research, harm is often perceived from a majority (cisgendered and heterosexual) perspective. Those in minoritized positions often face the issues addressed in research, such as discrimination or exclusion, in their daily lives, even if these would be exceptional for the majority. Therefore, addressing them in research might not cause harm but rather give an opportunity to address and analyse these experiences. In ethical evaluation, sexuality is seen as a sensitive personal feature, but often only in relation to minorities – and sometimes unnecessarily.
Ethical questions on (not) being a (partial) insider
One ethical question related to LGBTIQ+ related research is whether the researcher should be an LGBTIQ+ person. There is a historical change in how the insider status is perceived, ranging from whether it has been considered as a problem to seeing it as a requirement, and there are differences between disciplines. Researcher’s positionality may create trust even in surveys: It is not as much a question of researcher’s identity but of familiarity with the themes studied and how this positionality is communicated to the respondents. However, insider position is always partial – there are intersecting differences within the LGBTIQ+ minorities. Insider positionality may reduce unnecessary discretion, but there may also be a danger of imagining understanding the interviewee too easily. These are important ethical considerations to keep in mind particularly when doing qualitative interviews.
5.4. Non-binary data gathering & reporting in Iceland
Aró Berg, treasurer, Trans Island
The act on gender autonomy was passed in Iceland in 2019. Based on it, any person from the age of 15 years has the right to change the gender registration in the national registry without needing medical interventions or diagnoses. The Act also formalizes two specialized transgender health teams (based on age) within the healthcare system. People can choose their first names regardless of their gender. The Act also bans most unnecessary medical interventions on intersex infants when they can't give consent.
Based on the law, all forms and databases across public and private sectors allow for neutral gender registration. The option to register one's gender as neutral was adopted at the beginning of 2021. From 2022, the number of non-binary people has tripled. The total population of Iceland is around 400,000 people, and currently 217 individuals are registered non-binary. However, not everyone who are non-binary change their gender registration, for example if they do not want the X gender marker in their passport.
Data gathering and reporting must also adhere to the GDPR, one aspect being protection from direct or indirect identification. Because of this, results or indicators are rarely reported separately for non-binary people. Instead, non-binary data are generally randomly distributed between men and women before the data is reported. When the sample size is large enough and the data is not sensitive, the non-binary category is sometimes included. It could be argued, however, that statistical authorities are sometimes too cautious in this regard. Sometimes they choose not to include non-binary data in small samples, even when the data is not sensitive at all. As statistics are crucial for providing a foundation for all kinds of societal information and for the detection of inequalities, this lack of reporting is a problem.
Currently, researchers at the University of Iceland are conducting research about how non-binary people prefer to be asked about their gender in surveys and how they want to be represented in data when it's reported. This is the first research of this kind in Iceland. So even though Iceland has the option to register gender neutrally, there is still work to do in data gathering and reporting.