Present 

Members 

• Ms Helen Boaden (Chair)
• Mr Stephen Balchin
• Mr Ray Harris
• Mr Stephen John
• Dr Orla McBride
• Ms Isabel Nisbet
• Dr Rochelle Tractenberg

Secretariat

• Ms Eloise Ball, UKSA
• Mr Nikhil Harsiani, UKSA
• Ms Stephanie Jacobs, UKSA

Other attendees

• Prof Jayati Das-Munshi (for item 6)
• Mr Christopher During (for item 6)
• Ms Meghan Elkin (for item 7)
• Ms Hayley Forrest (for item 7)
• Dr Cath Hollyhead (for item 4)
• Ms Amelia Jewell (for item 6)
• Ms Joy Preece (for item 4)
• Ms Emma Rourke, Acting National Statistician (for item 8, and for items 6 and 7 in an observational capacity)
• Ms Michelle Waters (for item 4)
• Mr Martin Wessel (for item 5)
• Representatives from the GSS Harmonisation Team (for item 3)

Apologies

• Ms Vanessa Cuthill (member)
• Dr Sarah Markham (member)
• Ms Nicola Shearman (UKSA)
• Dr Dani Evans (for item 7)

1. Minutes and matters arising from the previous meeting

1. The Chair greeted all members to the meeting.
2. This is the last meeting for Ms Isabel Nisbet, as Committee member. The Chair thanked Ms Nisbet for her valuable contribution to NSDEC, having educated herself in methodology and the applications of ethical principles. The Chair commended Ms Nisbet for her sense of public purpose and morality and expressed gratitude for her service on this Committee.
3. Departing NSDEC Secretariat colleagues were thanked by the Chair for the work.
4. The Chair informed members that she will, shortly, be discussing with Emma Rourke, Acting National Statistician, a possible extension to the Chair’s term, which is due to end in January 2026
5. Minutes from the 23 April 2025 meeting were approved.

2. Welcome for new members (NSDEC(25)31)

1. The Chair welcomed the new members who were recruited in summer 2025. All Committee members each provided short introductions.
2. In brief discussion, the Committee spoke about the driving purpose of NSDEC’s work and ways in which they will collaborate.

3. Research to Assist in the Development of New Sex and Gender Identity Harmonised Standards (NSDEC(25)32)

1. Representatives from the GSS Harmonisation Team, based in the ONS, presented for this item, seeking ethical advice from the Committee. The Committee reviewed this paper, via correspondence, in August 2025. The research team were invited by the Chair to discuss the paper with the Committee in-meeting given the complexities surrounding this work.
2. The research team outlined what harmonisation is and how they propose to use respondent centred design (RCD). This research is in its discovery phase, and forms part of the wider piece on developing new harmonised standards for sex and gender identity.
3. The mental models component will involve focus groups (online), and the team intend to recruit participants from all four nations of the UK.
4. The research team propose to segment participants based on certain characteristics, which are more sensitive than usually used by the ONS. This is to avoid conflicts within focus groups that might impede gaining valuable insight from them.
5. In terms of the phrasing of the questions put to focus groups, the Committee recommend using plain English and/or practical examples. The research team acknowledged this and welcomed Committee members pointing them to exemplar research where plain English/behaviour-based questions have been utilised.
6. The Committee expressed support for the current stage of this research, with the caveat that the research team keep NSDEC updated of their evaluation and findings, with the possibility of their returning to a future meeting.

Action:

Committee members to send Secretariat any examples which the research team could use.

4. Census 2031 topic consultation (NSDEC(25)33)

1. Ms Michelle Waters and Dr Cath Hollyhead presented for this item. The main aims of this consultation are to gather evidence on which topics should be included in the 2031 census, as well as to collect information on what data the ONS needs to meet administrative data and harmonised standards objectives.
2. The research team informed the Committee that the consultation will be wide-reaching to include groups whose voices might not otherwise be heard. The Census 2031 topic consultation builds on previous exercises, such as the 2023 consultation into the future of population and migration statistics in England and Wales. Decisions will not be based on volume of responses (per group); rather, the team have developed an evaluation framework to focus recommendations for topics based on public need for data as expressed through consultation responses. The questionnaire will be published in English and Welsh.
3. The Census 2031 consultation proposal has been presented to the UKSA’s Methods Assurance Review Panel (MARP), and the consultation document already includes a high-level breakdown of the areas for which the ONS seek responses. In the interests of transparency, the ONS will publish more detail on the evaluation criteria, once the consultation period has closed.
4. The Committee raised the question of how the team will mitigate the risk that some groups, particularly those with political agendas (i.e., lobby groups) will be overrepresented in the consultation evaluation.
   1. The research team responded that the evaluation framework (see 4.2, above) will support evidence-based decisions to inform which topics for inclusion on the 2031 census. Decisions will not be based on volume of responses (per request); rather, based on the impact the data would have on supporting public good. After the consultation has closed, there will be a 2-year period in which stakeholder engagement, cognitive and user testing of questions will occur. These activities aim to bring in the voices of those less likely to complete the consultation, such as community groups. This will likely lessen the risk that lobby groups will influence decisions due to their political agendas and the representation of underrepresented communities is strengthened.
5. Regarding cultural context, the Committee noted that there might be more discomfort amongst the public, than there was in previous censuses, of the government attempting to collect information about individual citizens. The Committee asked the research team how they will address this.
   1. The research team acknowledged this and informed the Committee that the ONS already have a public acceptability strand of work. Additionally, while the consultation itself means to seek opinions from data users, the team will further focus on ascertaining the public acceptability of each topic as the evaluation (and subsequent work) develops.
6. The Committee recommended that the team prepare communications about the consultation for wider audiences who have not necessarily read the consultation document. Also, the Committee noted that there will be events that happen outside the world of statistics that will have implications for how citizens view the census. The research team acknowledged both points.
7. The Committee opined that a large fraction of the public may not see how completing a decennial census benefits their lives. They suggested that the ONS’ communication strategy includes informing not just policymakers of the value of census data, but the public on how critical decisions reliant on census data – such as consumer price indices – affects their lives, too. This will also help foster a sense of public trust directly in the ONS’ census activities, which is not necessarily mediated through the lens of policymaking. The research team agreed and noted that the 2031 census affords the opportunity to build a story about how completing the census can contribute to people’s everyday lives.
8. The Chair thanked the research team for their work and wished them luck with the consultation. She asked that the research team provide NSDEC with a high-level communications plan for the 2031 census (when available) and invited the team to return to a later meeting.

5. Causal impact of social capital on social mobility (NSDEC(25)34)

1. Mr Martin Wessel, from the Behavioural Insights Team (BIT), presented for this item. Mr Wessel outlined what BIT intends to achieve with this research proposal, involving the linking data from the Longitudinal Education Outcomes (LEO) dataset with de-identified, institution-level social capital measures derived from Meta’s platforms. He also highlighted his awareness of ethical risks, including the sensitivity of school- and institution-level data, and the complexities around data subjects’ consent.
2. In response to where data will be held during analysis, Mr Wessel confirmed that data access will be via the Secure Research Service (SRS).
3. The Committee expressed a concern that data subjects, whose data is used for projects like this, do not necessarily perceive a material benefit from the research; though, other parties, for example the data owner (in this case, a private company), receive financial gain. This raises a question about how transparent the research outputs should be, and who owns this output data.
   1. In response, Mr Wessel confirmed that all BIT’s research will be in accordance with the Digital Economy Act 2017 (DEA), and results will not be published at school-level. BIT will not be conducting analysis that other individuals cannot do, as they intend to use published ONS data, with user data obtainable from Meta. Also, he noted that the rich datasets Meta has are often underutilised, so by using such data to inform questions of social concern, this benefits the public in a novel way.
4. Mr Wessel confirmed that Meta will not be directly involved with this research after the point of providing their dataset, and that any publications will include that results are based on Meta’s data about their product, Facebook.
5. On clarity in potential research publications, the Committee suggested BIT are clear about which variables and timescales to which their results refer, as there is a distinction between social and economic mobility. Mr Wessel acknowledged this suggestion.
6. The Committee spoke of how there exists, in some parts of the UK, a lack of public trust in the linkage of administrative datasets. Given that BIT proposes to link administrative records with privately-owned data, this might increase the risk to public trust.
   1. Mr Wessel acknowledged that his research is novel, and that it carries reputational risks. This risk is mitigated somewhat by the public response observed from a release of similar research in March 2025. While that research did not require use of the SRS, there was a positive media response, with one news outlet praising the value of work which investigates social connections over time. Ms Wessel predicts a similar response to the research currently proposed.
7. In response to a question from Ms Stephanie Jacobs around assurance that ethical, as well as legal, consent is obtained, Mr Wessel informed that Harvard University’s Institutional Review Board (IRB) approved the research proposal having likely considered the extent to which ethical and legal consent had been accounted for.
8. The Committee expressed broad support for the research proposal and wished Mr Wessel luck.

6. Social and Economic Predictors of the severe mental disorders, the SEP-MD study (NSDEC(25)35)

1. Prof Jayati Das-Munshi (King’s College London), Mr Christopher During and Ms Amelia Jewell (both from the South London and Maudsley NHS Trust) presented for this item. This programme of research has not been reviewed, in earnest, by NSDEC since 2017, so the Chair emphasised to the research team that they should highlight ethical risks and planned mitigations going forward.
2. The research team gave an outline of their work, which is motivated by understanding more about the social determinants of debilitating mental disorders. The study includes a linkage of data from the Clinical Records Interactive Search, (CRIS), electronic health records from South London and Maudsley NHS Trust (SLaM). SLaM Trust covers a catchment of 1.3 million people in southeast London. A linkage between CRIS and Census 2011 at person-level are accessed via the SRS.
3. The NHS Research Ethics Committee (REC) in 2023 renewed approval for 5 years for access to clinical records for this work.
4. Prof Das-Munshi gave details of three publications emanating from this programme, and the impacts they have had to the research and healthcare communities investigating severe mental health disorders.
5. Dr Sarah Markham (Committee member) is listed an author of one of the research programme’s associated publications. As such, she has not provided any input (qua an NSDEC member) on this item, either via correspondence or in the meeting (for which she is absent).
6. The research team listed mitigations for some of the ethical risks involved in their work: the team follow the 5-safes framework; all researchers are ONS accredited researchers; they also hold honorary contracts with SLaM; and all researchers must stay up-to-date with mandatory information governance training.
7. A further risk raised by the research team is that, should the programme of work be paused, this would affect the research partnerships they have fostered to date, some of which rely on the research to inform their delivery of services that benefit people in the local areas (that is, in and around the SLaM NHS Trust).
8. The Chair commended the research team for their innovative and important use of census data.
9. In discussion, the Committee raised the question of to what extent a medical record of a patient should be ‘enriched’ by social or other indicators of wellbeing, and whether data linkage to the census data is necessary to ascertain the information about patients the research team seek. Given census records are time-delayed, not attributable to any individual, and do not give clinicians information about relevant indicators which are amenable to modification (for example diet and exercise routines), the Committee asked if the specific benefits of linking the SLaM medical records to census data outweigh the risks associated with such linkage.
   1. While the research team accepted that healthcare records are routinely collected, and as such social information is poorly captured in these data, they also highlighted the value that the linkage to census data affords. Health care records typically do not capture social information on patients in a systematic manner. Therefore, the linkage to census data offers researchers important information about relevant indicators, which are not otherwise available. The research has highlighted social indicators which may be amenable to modification, which if address, could improve patient health. Social indicators have been hitherto under-studied partly due to data limitations, which the health records linkage to census partly addresses.
10. NSDEC noted that, given the research design, linkage must be related to controls as well as the clinical cases of interest. Therefore, in justifying their proposal for data linkage, the research team should be mindful that this must also account for the volume and breadth of linkage associated with control groups.
    1. In response, the research team explained how they match cases of people who made contact with the mental health trust with up to 5 controls from the surrounding area. This provides a population control comparison group and matching with up to 5 controls is needed for adequate statistical power for the analyses which have been planned. The controls are sampled from the neighbouring area but not through matching on any other demographic characteristics. The team also informed the Committee of two study designs (case control and cohort study designs) which form the basis of upcoming publications.
    2. As an example of a relevant study finding, the researchers have found that indicators for ‘social exclusion’ may be associated with mortality in the general population but are more so in people with severe mental disorders and with more substantive associations at earlier ages. This knowledge can potentially inform the development of interventions in younger people and might also inform the importance of considering social exclusion in these populations to tackle premature mortality, more generally.
11. The Committee expressed broad support and wished the research team luck with their projects, while noting the need for ongoing ethical review, when and where appropriate.

Action:

NSDEC Secretariat to contact the research team to agree a means of engagement with CADE and, by extension, NSDEC.

7. Safety During Childhood Survey (SDCS): Online pilot (NSDEC(25)36)

1. Ms Meghan Elkin and Ms Hayley Forrest (both from the ONS) presented for this item.
2. The research team began by giving an oral update regarding the SDCS schools pilot (previously discussed in the January 2025 meeting, as NSDEC(25)12). Following the feedback given by NSDEC to the team’s recent update paper (via correspondence) and from the NSPCC’s research ethics committee, and a review of everything they have learnt this year, the team have decided to pause work on the schools component until the online pilot has concluded. The evidence-based improvements gleaned from the online survey will inform how to proceed with data collection with under 16s.
3. The pause in the schools’ pilot gives the research team some bandwidth to cognitively test the SDCS questionnaire, which will be done before the end of the financial year. Results from this cognitive testing, and the implications for the questionnaire design, will be provided to NSDEC by the researchers.
4. In discussion, the Committee raised the following points:
5. While the Committee sees the impetus for, at present, focusing only on delivering the questionnaire through online means, they recommended the research team to be mindful that sometimes people can be more nervous about engaging with surveys online (that is, giving personal information) than via in-person modes. The research team acknowledged this point.
6. During the COVID-19 pandemic, parents needed to provide means for their children to access online, for instance, schooling. The Committee observed that we cannot assume, now that the pandemic has subsided, that households still have these means of online access for children. This may be a barrier to accessing the online SDCS. The research team agreed and proposed to add more to the follow-up questions asked of the questionnaire’s non-responses to understand the barriers people have in completing the survey.
7. The Committee commended the SDCS for their sensibility in, for now, focusing on the online pilot, and recognised that NSDEC and the SDCS team will continue to engage closely as the work evolves. The Chair thanked the research team for their joining the meeting.

Action:

SDCS team to send NSDEC evaluation of the questionnaire’s cognitive testing, when appropriate.

8. Discussion with the Acting National Statistician, Emma Rourke (NSDEC(25)37)

1. The Chair welcomed Emma Rourke, Acting National Statistician, to the meeting. Ms Rourke thanked Ms Nisbet and Mr Balchin for their service to this Committee.
2. Ms Rourke explained how the roles of the National Statistician (NS), and Permanent Secretary for the ONS, are now distinct. Where the NS role previously oversaw the technical capabilities of the ONS and the wider GSS, as well as operational oversight, the Permanent Secretary will now oversee ONS operations. Darren Tierney was appointed as ONS’ Permanent Secretary in August 2025. The NS will retain methodological and quality responsibilities, and Ms Rourke intends to elevate the GSS and the Government Analysis Function in her role as Acting NS.
3. A challenge for the Analysis Function will be comprehensively understanding the challenges associated with the Civil Service’s increasing adoption of Artificial Intelligence (AI) methods.
4. In discussion, Committee members raised the following:
5. While there are benefits from organisations separating technical and operational leadership, the ONS heads should be mindful that sometimes the public see these functions as linked together. Ms Rourke acknowledged this point.
6. A challenge to NSDEC is identifying how best to review ethical considerations of research brought to them such that they add the most value to the statistical system. Ms Rourke concurred.
7. Ms Rourke spoke to how NSDEC’s links between the NS advisory groups, such as the National Statistician’s Inclusive Data Advisory Committee (NSIDAC), should be strengthened. She said that she sees NSDEC, NSIDAC and the Methods Assurance Review Panel (MARP) as a ‘trinity’ that will add value to how the ONS examines the work across the government’s statistical system. She said she sees this ‘trinity’ of advisory groups as the basis of influence on the National Statistician.
8. Ms Rourke will be soon discussing with ONS departmental leads to promote how departments can get engaged with the NS advisory groups, such as NSDEC.
9. On cohesion across Government in the analysis function, Ms Rourke said that a priority she will be communicating to senior staff in the ONS is building stronger links with analytical colleagues in other government departments so that knowledge can be shared.
10. The work of the National Statistician’s Expert User Advisory Committee (NSEUAC) is something that Ms Rourke recommended NSDEC members heed, as it informs on the impacts of government statistics to users.
11. Other points raised by the Committee include:
12. In the UK and abroad, statistical training often impresses the importance of ethical conduct when producing statistics, however, there is less import put on the responsibility of consumers to use such statistics in an ethical manner. Ms Rourke responded that she would like to advocate for greater awareness of ethical implications for statistical users, and that the NS’ role with regard to the National Data Library will inform in what ways the NS can advocate for user awareness. Also, Ms Rourke noted that the increased spread of misinformation, especially around times of general elections, will have to be considered carefully by the NS and her advisory groups, including NSDEC.
13. Ms Rourke, again, stated the importance of this Committee, particularly in the context of how the leaders of the GSS and Analysis Function develop their thinking around risks of AI and other emerging technologies, because these concerns have many touch points with the UKSA’s ethical principles.
14. The Chair thanked Ms Rourke for her time and welcomed her return to the Committee for a follow-up discussion in the near future.

9. Any other business

1. Ms Stephanie Jacobs informed the Committee that Ms Eloise Ball has joined the Secretariat team.
2. The Committee discussed how there is value in NSDEC’s review of research, not only insofar as individual projects/programmes receiving the Committee’s input, but also the value added to the wider statistical community.
3. Committee members spoke of how best to align the ethical principles which underpin NSDEC’s review with other ethical frameworks followed by the statistical community.
4. As an example of such alignment, Ms Stephanie Jacobs noted the work the Office for Statistics Regulation (OSR) is doing to ensure the UKSA’s ethical principles are incorporated into the refreshed Code of Practice for Statistics (brought to NSDEC in the January 2025 meeting, as NSDEC(25)11).
5. The Committee emphasised that reference, by researchers and statisticians, to the refreshed Code of Practice for Statistics (or ‘the Code’) should not be a one-time thing (at the commencement of a piece of research), nor should it be treated as a ‘tick-box’ exercise. Rather, data practitioners should embed ethical practice by referring to the Code (or other applicable ethical framework) throughout their research process. This is vital, as public trust must be continually ‘won’ in research/statistical lifecycles where their data is being used.
6. The Chair informed members that they will shortly receive a Confidentiality Undertaking to sign, as well as a request for declarations of interest.
7. The Committee recommended that they are provided with a glossary of terms pertaining to the UKSA, ONS, methods and NSDEC-specific operations as an aid to the members’ reviews.
8. The Chair closed the meeting.

Action:

NSDEC Secretariat to produce a plan of how to further publicise the Committee’s work.

Action:

Secretariat to contact all members for declarations of interest.

Action:

Secretariat to produce a glossary for NSDEC members.