Drew’s project includes several aspects and objectives. The project’s main topics are: 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”.
In 2015, the Committee evaluated a request from Drew concerning non-destructive analyses of skeletons from Tukthuset, and recommended, with some comments, that the analyses be carried out (2015/29). The present application expands upon this work by requesting molecular analyses of the skeletons with presumed tuberculosis (TB), and by including DNA-analysis of a neonate skeleton.
The request from Drew is primarily triggered by The Wellcome Trust’s (TWT) rejection of Drew’s grant application. TWT acknowledges the skeletal collection from Tukthuset as interesting and worthy of study. However, TWT finds Drew’s application lacking in ambition and her proposed methods traditional and non-innovative. They state that Drew’s ‘restraint on ability to engage with biomolecular approaches reduces the amount of data that could be generated and, in turn, reduces the potential significance of the research’. TWT suggests the inclusion of both bimolecular approaches and analyses of historical documentation, and writes that Drew might apply again, but with a new idea. Drew has realized that molecular analysis of human remains with suspected tuberculosis is the only method that can give definitive evidence for tuberculosis, and, thus, that her own research ‘would be limited if we relied only on macroscopic analysis of the remains’.
In addition, Drew requests to include testing of a neonate skeleton (Box 29) from Tukthuset. This is based on a request from a member of the public, Jorunn Tørstad, to Prof. em. 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 here, together with their new born 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 has included a DNA test of the neonate in her request.
Remains of approximately 300 individuals from Tukthuset have previously been examined by Drew and her colleague Gwyn Madden. In order to get definitive answers on occurrence of tuberculosis, Drew now wishes to conduct molecular tests on those skeletons bearing lesions consistent with tuberculosis. To conduct the molecular analysis, Drew has established a collaboration with Dr. Ron Pinhasi at the University of Vienna (formerly of the Earth Institute, University of Dublin). Pinhasi has established a new aDNA lab where he and his ‘associates are in the midst of a global study of tuberculosis and his lab has devised a new protocol that is both more accurate and uses less bone tissue than ever before’. This new protocol is only available to members of the Pinhasi lab.
The samples will be extracted from vertebrae and ribs, each sample consisting of 50 mg or less. This is necessary ‘in order to have enough material to test for Mycobacterium tuberculosis, using an array that is specific for the pathogen’s genome’. The samples will 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 will be constructed. Drew intends to examine the results of these profiles and of the molecular tests statistically in order to analyse correlations between age, sex and various disorders and illnesses.
The Pinhasi lab will also 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 will 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 has 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.
Drew considers several ethical aspects of her research project. Firstly, Respect for remains and descendants: The individuals at Tukthuset have not been identified, and, with one exception, 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. Further, Drew believes 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. Concerning Respect for the material, Drew contends that the material’s origins are well documented and the destructive tests require very small samples (50 mg or less).
The Committee’s evaluation
In the evaluation of the project, the Committee takes its Guidelines for research ethics on human remains (https://www.etikkom.no/en/ethical-guidelines-for-research/guidelines-for-research--ethics-on-human-remains/) as a starting point. Guidelines for research ethics in the social sciences, humanities, law and theology (https://www.etikkom.no/en/ethical-guidelines-for-research/guidelines-for-research-ethics-in-the-social-sciences--humanities-law-and-theology/) forms the general framework for the Committees’ specialised guidelines.
The Committee has 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 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 institutionalised. Due to the status of the material and the fact that no detailed research has previously been done on it, the Committee considers research on this material as a positive contribution (as was also expressed in the recommendation of 2015/29). The Committee also finds the cooperation with the Pinhasi lab an opportunity for Drew to place her project within a solid methodological framework. However, the Committee has several comments regarding the project.
Since the request concerns destructive samples of human remains, the institutional responsibility of the material must be clarified. The material is part of the Schreiner Collection at Division of Anatomy at the Institute of Basic Medical Sciences (University of Oslo). The Committee has received a letter from Per Holck, professor emeritus at the Division of Anatomy, who and recommends Drew’s research and request. However, as far as the Committee is aware, it is not Per Holck, but the leader of the Institute of Basic Medical Sciences, who is responsible for the Schreiner Collection. The institutional arrangements should, then, be formalized with the leadership at the Institute. As per Norway’s Research Ethics Act of 2017, institutions of higher education have a formal responsibility to ensure that researchers act according to national ethical standards.
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 colleagues working with her on the project, Madden and Pinhasi.
Alvestad’s contribution to the project is to examine archival documents about Tukthuset and translate them into English. The Committee would like to add (as in 2015/29) ‘that a rich tradition of research also exists on the social history of Norway, which could also be consulted (albeit mostly in Norwegian) to broaden the understanding of the social and cultural context of Tukthuset in the relevant historical period’.
When considering Drew’s request, the aspect of the feasibility and consequences of the research project (Guideline 6) has been important. The Committee finds it likely that, with the proposed methods, Drew will 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, the project’s aims are much wider, and includes many objectives and aspects that are not well linked. There is, for example, no clear relation between the research aims 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 work houses and prisons’, and discussing ‘the human cost of war’, as in the present project description, are not feasible. The Committee considers it unlikely that the project as described will lead to the intended development of knowledge beyond knowledge about tuberculosis and other diseases in the Tukthuset material, and recommends Drew work on to make the project more realistic and achievable.
2. DNA test of a neonate skeleton from Tukthuset
The request for molecular analyses of human skeletons with presumed tuberculosis and the request of a DNA test of a neonate skeleton are not, in the Committee’s opinion, connected. Further, there are no specific research questions attached to the analysis of the neonate skeleton. Drew holds that the DNA analysis of the neonate ‘gives a face to those who perished in Tukthuset’. However, the results of the analysis will not give substantial new information, since it is already known that Anne was born and died as a new born 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. However, the neonate skeleton is part of a human remains collection at the University of Oslo, and is, therefore, research material. As pointed out by Drew, the material from Tukthuset does not include many child skeletons, which makes the neonate skeleton from Box 29 rare. 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.
Assuming that our comments regarding the formalisation of the institutional arrangements, the availability of results and the feasibility of the project are followed, the Committee recommends the molecular analyses of human skeletons from Tukthuset with presumed tuberculosis.
The Committee does 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.