Request concerning aDNA analyses of human remains from Tukthuset (2022/147)

On 2 November 2022, the National Committee for Research Ethics on Human Remains (Human Remains Committee) received a request from Dr. Rose Drew, researcher and forensic anthropologist, concerning biomolecular studies of skeletal material from Tukthuset related to the project “Tukthuset: A study of crime and punishment, evidence of early anatomical investigations, and the human cost of poverty.”

The skeletal material from Tukthuset is located in the Schreiner Collection (DSS) at the Institute of Basic Medical Sciences (IMB), University of Oslo (UiO). The IMB has approved Drew’s request, pending an evaluation from the Human Remains Committee. 

The committee has been informed by the IMB that Drew is a researcher at the University of Winchester. The Institute of Evolutionary Medicine, University of Zürich is listed as the institution responsible for the project and professor Dr. Dr. Verena Schünemann, Institute of Evolutionary Medicine, University of Zürich, as a collaborator. The project is funded by the University of Zürich and the «Evolution in Action» Research Priority Program, associated with the lab of Schünemann.

The project period is set to February – September 2023.

The request to the Human Remains Committee includes the committee’s submission form, project description, ethical self-assessment, permission from IMB and table of the material with catalogue numbers and short descriptions. The request was evaluated by the Human Remains Committee in its 30 November 2022 meeting.

Background

Drew has worked on the Tukthuset material for several years and has previously requested advice from the Human Remains Committee regarding her work (see evaluations from the committee in cases 2015/29, 2017/202 and 2019/103).

In 2020-2021, Drew and her team conducted biomolecular tests on skeletons from Tukthuset bearing lesions consistent with tuberculosis. The purpose was to get definitive answers on occurrence of tuberculosis. No definitive biomolecular evidence of tuberculosis was identified.

Purpose and material

The purpose of the present project is “[t]o determine of Tuberculosis was as wide-spread among the incarcerated poor of Tukthus in Oslo, as is claimed in 19th c records”.

The material is the remains of individuals from Tukthuset cemetery in Oslo, from late 18th – early 19th centuries. Approximately 20 vertebrae (s. vertebra = part of the spine) from 33 individuals from Tukthuset will be sampled. The degree of preservation of the individuals and parts to be studied is in “[f]airly good condition due to burial in blue clay”. The selection of up to 20 vertebrae will be based on bone quality, lesions, and will include a mix of males and females. The size of each sample is 50mg to perhaps 100mg.

A team from the University of Zürich, led by Schüneman and her lab, will do aDNA testing and analysis on behalf of the Tukthuset project. The lab will provide all data to Drew for the continued research of individuals from Tukthuset cemetery and will not use any of the data in their own research. Schünemann and her team will collect the vertebrae, isolate the paleogenetic material and test for tuberculosis.

The raw data will be shared with IMB. Drew expects no leftover materials, since the plan is to remove very small amounts of bone from each vertebra. Any leftover materials would, with permission, be retained in Zürich for future work on behalf of IMB, stored under sterile conditions.

Ethical self-assessment

In the ethical self-assessment, several aspects of the research project are considered. Under the heading “Respect for remains and descendants” it is underlined that the individuals at Tukthuset have not been identified. Further, that the researchers from the University of Zürich will not use the Tukthuset data in their own research.

The criteria for material selection are considered: the individuals selected for sampling are those who have previously provided sexing data and are considered in good enough condition to provide molecular information. The project group has determined that aDNA obtained from vertebrae are most likely able to provide viable aDNA for tuberculosis.

Under “Respect for groups”, Drew reflects on the inhabitants of Tukthuset being marginalized individuals and/or representing marginalized groups. Drew states that respect for these individuals and groups is “the impetus for this study”.

On “The material’s origins”, Drew informs that the history of the site, the development and use of the associated churchyard, and the source of the remains are well documented.

Considering “Destruction”, Drew underlines that the destructive tests require very small samples (50 mg to 100 mg per sample) and that only one vertebra will be needed from each individual. The technique to be utilized is claimed to be minimally invasive, leaving only a small (1-2mm) hole.

The committee’s evaluation

In the research ethical evaluation of the request, the committee takes its Guidelines for Ethical Research on Human Remains (2022) as a starting point. The committee may also refer to other national and international research ethics guidelines where relevant.

The main feedback from the committee is related to point 6 in the guidelines: “Research project quality and feasibility”. An ethical consideration of research on human remains should include an overall assessment of the project. This is of particular importance in a project that seeks to undertake destructive methods on human remains. The request from Drew is fragmentary and the project description and ethical self-assessment lacks several key factors.

Project rationale and context

Firstly, the rationale behind the purpose of the project is not described. The project description is a description of how, and not why, the analyses will be executed. Apart from determining the presence of tuberculosis, it is not made clear what the broader context and aim of the project is. Previous research is not presented, nor are the knowledge gaps the project seeks to fill and what the project aims to achieve with the results of the aDNA analyses.

Methodology

There are methodological problems raising ethical issues. The purpose of the project in 2019 was the same as the purpose of the present project – to get definitive answers on occurrence of tuberculosis. The analyses conducted in 2020-2021 came back with negative results for tuberculosis. The project protocol should therefore have described clearly why it aims to answer the same question as the previous project, what the project team will do differently this time to achieve different results and what makes them sure that these bone samples are sufficient to be able to answer the research question. It is problematic to start a new project with the same purpose without discussing these issues, particularly when the new project entails more destructive sampling of human remains.

Tuberculosis is most common as a lung disease and does not necessarily settle in the bones. The fact that no traces of tuberculosis have been found in the skeletal material does not mean that the individuals did not have tuberculosis. The lack of reflection on this methodological issue in the request is problematic.

Although the described amount of 50-100mg bone powder can be considered small in this context, to get the level of destruction required to obtain a 50-100mg sample of trabecular bone from a vertebral centrum can be considered large.

Institutional arrangements

The institutional arrangements framing the project appear confusing. On the one hand, Drew is the project leader, applicant and, as informed by the IMB, a researcher at the University of Winchester. On the other hand, the University of Zürich is given as the institution responsible for the project and as the project funder. At the same time, the University of Zürich and professor Schünemann is given as collaborator.

Researchers have an individual responsibility to ensure that their research is conducted in accordance with norms of research ethics. However, the overall responsibility for fulfilling the requirements of the Research Ethics Act lays with the institution.[1] A formal affiliation with a research institution, which would be responsible for the researcher and for the project, should be in place. This is fundamental to ensure a clear organizational and ethical framework for the research. Therefore, the committee recommends clarifying the applicant’s formal affiliation and the institutional arrangements before starting a research project.

Conclusion

The committee believes the above-mentioned problems with project design, methodology and project organization weaken the project quality and feasibility to such an extent that it cannot be ethically recommended.

[1] Lov om organisering av forskningsetisk arbeid (forskningsetikkloven).