The 2017 request
On 17 August 2017, The National Committee for Research Ethics on Human Remains received a request from Dr. Rose Drew, University of Winchester, UK, concerning destructive testing of human remains as a part of her project “Tukthuset: A study of crime and punishment, evidence of early anatomical investigations, and the human cost of poverty”. The request was evaluated by the Committee in its meeting 7 September 2017. The committee’s evaluation may be read here.
Drew’s project included several aspects and objectives. The project’s main topics were: 1. The study of ‘diseases and disorders present in this segment of Oslo’s population c. 1780-1840’ based on molecular analyses of skeletons from Tukthuset; 2. The investigation of ‘the early years of the School of Anatomy in Oslo and in general on anatomical preparations, dissections, and surgeons gaining practice’; 3. The “social implications of work houses and prisons” and “the human cost of war”.
Remains of approximately 300 individuals from Tukthuset have previously been examined with non-destructive methods by Drew and her colleague Gwyn Madden. Molecular tests of skeletons bearing lesions consistent with tuberculosis were to be conducted in order to get definitive answers on occurrence of tuberculosis. For the molecular analysis, Drew had in 2017 established a collaboration with Dr. Ron Pinhasi at the University of Vienna (formerly of the Earth Institute, University of Dublin), who had established a new aDNA lab where they have devised a new protocol that is both more accurate and uses less bone tissue than in other labs. The samples were to be extracted from vertebrae and ribs, each sample consisting of 50 mg or less. In addition to tuberculosis tests, the samples would also be tested for childhood diseases of deficiency (such as rickets, anaemia, malnutrition, dental defects), leprosy, osteomalacia/osteoporosis, syphilis, non-specific periosteal inflammations and infections, and widespread dental disease. Further, age at death and sex profiles were to be constructed.
In addition, Drew requested to include sampling of a neonate skeleton (Box 29) from Tukthuset based in a request from a member of the public, Jorunn Tørstad, to professor emeritus Per Holck in 2015. Tørstad has obtained information that her great-great-great grandfather and his wife ended up at Tukthuset. Both he and his wife died there, together with their newborn daughter Anne. Few neonate skeletons have been found at Tukthuset, and Drew claims that the contents of Box 29 are likely the remains of Anne. Tørstad would like DNA tests performed on both herself and the skeletal remains from Box 29 in order to determine whether or not they are those of her ancestor. Hence, Drew included a DNA test of the neonate in her request. The Pinhasi lab was going to conduct the test of the neonate skeleton; initially, to test if the skeletal remains are those of a female. If it is a female, the lab was to obtain DNA profile for comparison with that of Tørstad.
In order to enhance the interdisciplinary scope of the project and to place the project into a historical framework, Drew had established a collaboration with Dr. Knut Alvestad, a Norwegian historian based in Winchester. Alvestad’s role will be to examine archival documents about Tukthuset and translate them into English.
In the research ethical evaluation of the 2017 request, the Committee treated Drew’s request as two separate cases: 1. Molecular tests of human skeletons from Tukthuset with presumed tuberculosis; 2. DNA analysis of a neonate skeleton based on a private request.
1. Molecular analyses of human skeletons from Tukthuset with presumed tuberculosis
The Committee recommended the molecular analyses of human skeletons from Tukthuset as described in Drew’s request. The material from Tukthuset is from the 18th and 19th centuries and has no legal protection in Norway, and, thus, the responsibility to store and examine the material is not institutionalized. Due to the status of the material and the fact that no detailed research has previously been done on it, the committee considered research on this material as a positive contribution (as was also expressed in the evaluation of 2015/29). The Committee also found the cooperation with the Pinhasi lab an opportunity for Drew to place her project within a solid methodological framework. However, the committee had some comments, regarding the formalization of the institutional arrangements, the availability of results and the feasibility of the project.
First, the committee urged Drew to formalize the institutional arrangements with the management of the Schreiner collection and the Institute for Basic Medical Sciences, where the remains are stored, and underlined that it presupposed that the results from Drew’s research, including the results from her collaborators’ research, would be made available to the University of Oslo.
Second, the committee had some concerns regarding the feasibility of the project. The feasibility of a research project is of particular concern when destructive methods are to be applied (see Guidelines for research ethics on human remains, no. 6). The committee found it likely that, with the proposed methods, Drew would manage to study ‘diseases and disorders present in the segment of Oslo’s population c. 1780-1840’ based in molecular analyses of skeletons from Tukthuset. However, there was, for example, no clear relation between the study of diseases through molecular analysis and the study of ‘the early years of the School of Anatomy in Oslo and in general on anatomical preparations, dissections, and surgeons gaining practice’. Further, gaining knowledge about ‘the social implications of workhouses and prisons’, and discussing ‘the human cost of war’, as in the present project description, were considered not feasible. The committee considered it unlikely that the project as described would lead to the intended development of knowledge beyond knowledge about tuberculosis and other diseases in the Tukthuset material, and recommended Drew to work on this to make the project more realistic and achievable.
2. DNA test of a neonate skeleton from Tukthuset
The Committee did not recommend the DNA analysis of the neonate skeletal remains from Box 29 because the material is rare, and the results have no research significance. Since the neonate skeleton is part of a research collection at the University of Oslo, it must be treated as research material. The request for molecular analyses of human skeletons with presumed tuberculosis and the request of a DNA test of a neonate skeleton were not, in the committee’s opinion, connected, and there were no research questions attached to the analysis of the neonate skeleton. The results of the analysis would not give substantial new information, since it is already known that Anne was born and died as a newborn at Tukthuset. The results of the tests can only answer questions of personal interest to one individual, and have no other application, thus, the committee does not consider this to be research. Further, and as pointed out by Drew, the material from Tukthuset does not include many child skeletons, which makes the neonate skeleton from Box 29 rare.
The 2019 request
The aims and objectives of Drew’s project from 2019 have not changed since the request from 2017. However, Drew requests several substantial changes related to material, method and collaboration partners:
- A request to include skeletal material from several additional individuals from the 4000 and 7000 series at The Schreiner collection. These remains were not excavated in 1989, yet they were recently identified by professor Per Holck to stem from the Tukthuset cemetery.
- A request to conduct stable isotope analyses, with the intention to investigate migration, nutrition and identify severe dietary stress (starvation), and aDNA analyses of the skeletal material.
- The molecular studies will potentially identify two other bacterial diseases: syphilis and leprosy. The testing for leprosy does not require additional bone, as leprosy and tuberculosis can be tested from the same material.
- The requested sampling sizes are increased from approximately 50 mg per sample (2017 request) to 100-150 mg per sample (2019 request). The samples will be extracted from the vertebrae and ribs.
- Drew is no longer cooperating with the Pinhasi lab at the University of Vienna but is now cooperating with professor Verena Scünemann’s lab at the University of Zürich.
- Drew has established a collaboration with Dr. Elise Naumann at NIKU, who will conduct the stable isotopic studies.
- Dr. Helen Donoghue, Center for Clinical Microbiology, Research Department of Infection, University of London
In addition to these changes, Drew makes a new request to sample rib fragments from the neonate skeleton from Box 29 for a sex determination test. The aim of this test, unchanged from 2017, is to determine whether or not the neonate skeletal material is those of Jorunn Tørstad’s ancestor.
Drew has formalized the contact with the Schreiner collection, and did in August 2018 receive a formal permission to use the material from the Schreiner collection (as the project was described in the 2017 request). The permission is signed by Prof. Svend Davanger, Institute of Basic Medical Sciences, Faculty of Medicine (UiO). The Schreiner collection awaits the committee’s ethical evaluation of the 2019 request before they can give Drew an answer.
Drew considers several ethical aspects of her research project. Firstly, Drew considers “Respect for remains and descendants”: The individuals at Tukthuset have not been identified, and Drew will not do any identification work. The inclusion of a DNA test of one of the individuals (the neonate) is on the initiative of a possible descendant, who is interested in her family history. Drew underlines that the testing of the neonate is time sensitive due to Tørstad’s age. Considering “Respect for groups”, Drew writes that since her research project is all about telling the story of a marginalised group, respect for other groups is the impetus for her research. On “The material’s origins”, Drew contends 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 there is no intention to destroy or damage the remains, and that the destructive tests require very small samples (50 mg to 100 mg per sample). The remains will be handled with respect and care by competent personnel.
The committee’s evaluation
In the research ethical evaluation of the request, the committee takes its Guidelines for research ethics on human remains as a starting point. Guidelines for research ethics in the social sciences, humanities, law and theology forms the general framework for the committee’s specialised guidelines. The further evaluation takes the changes made to the project into consideration.
The committee finds the addition of skeletal material from new individuals to the research material a strength that could enhance the potential of knowledge gain for the project. Further, the committee considers the inclusion of two new partners in the project as positive. It is particularly a strength that a researcher from NIKU (Dr. Naumann) will be part of the project. NIKU has extensive expertise in research on human remains, is responsible for the excavation of automatically protected Christian tombs in Norway and was responsible for major excavations of post-reformed cemeteries. The collaboration with NIKU will ensure the project's knowledge and expertise from a central Norwegian research environment.
It is difficult for the committee to consider how the change from the Pinhashi lab to the Schünemann lab will affect the project (beyond the question of sample size), and Drew does not give any reasons for this change. The Schünemann lab seems to be a renowned and prestigious lab, and the committee does not have any objections to the change (beyond the question of sample size).
The committee has some remarks related to the question of the sample sizes, which has increased from 50 mg or less in 2017 to 50 – 100 mg in 2019. Drew herself is uncertain whether the Schreiner collection will grant permission for larger samples than 50 mg per individual, but the committee misses a problematisation of the consequences of a possible limitation of the sample material to 50 mg per individual for the research project. In 2017, when the partner was the Pinhasi lab, the needed sample size was a maximum of 50 mg per individual. It was emphasized that his laboratory was the only one who could do analyses on such a limited sample material (up to 50 mg). Does that mean that other laboratories need more than 50 mg for this type of studies? How large sample sizes are usually needed (minimum 50 mg or more)? If other laboratories as a standard require a larger specimen, why would the IMB reject the desire for sample size up to 100 mg per individual?
In a project with many partners from different scientific fields, formalizing the collaboration, the ownership and access to the material and to the results, is of particular importance. The committee presupposes that the results from Drew’s research will be made available to the University of Oslo. This applies not only to Drew herself, but also to her collaborators working with her on the project.
Drew presents no changes from the 2017 request regarding the neonate skeletal material from Box 29. The request for a sex determination of the neonate skeleton is based on Tørstad’s genealogy studies and is not linked to the research project or research. Therefore, the committee upholds the evaluation from 2017: Considering the
rarity of the material, and that the requested DNA analysis is not research, the Committee cannot recommend the destructive tests of the neonate skeleton.
The project has developed further since the committee expressed its support for the research project in 2015 and in 2017 through the association of new researchers and research environments. The project has gained a broader scope and the material is now framed within larger contexts, which earlier was pointed out as desirable by the committee. The committee is still positive to Drew’s research on the material from Tukthuset. Assuming that the committee’s comments regarding the increased sample sizes and the formalization of the collaboration, ownership and access to the material and results are considered, the committee recommends the project.
The Committee does not recommend the sex determination test of the neonate skeletal remains because the material is rare and the results have no research significance.