Peter Harper (Cardiff University) har lige sendt følgende udkast til ansøgning (til Wellcome Trust) til et indsamlingsprojekt vedr. ressourcer (arkivalier, fotos, interviews mm.) til den medicinske genetiks historie. Det er en meget seriøs ansøgning som jeg mener kunne være interessant for vores eget indsamlingsarbejde. Peter Harper vil gerne at vi indgår i et mere omfattende internationalt netværk omkring projektet.
PRESERVING THE HISTORY OF HUMAN AND MEDICAL GENETICS
(Draft application to Wellcome Trust) tillæg 29. juni: Peter Harper har i dag sendt en revideret version, som fylder ret meget. Kan fås hos mig (ThS).
Peter S Harper, University Research Professor in Human Genetics, Cardiff University.
Peter Keelan, Head of Special Collections, Cardiff University Libraries
SUMMARY OF PROPOSED RESEARCH
The key goal of this research project can be summarised as being to ensure preservation of the written and oral history of human and medical genetics by:
1. Identifying and conserving key written records, including personal scientific records of workers; records of societies and institutions; monographs on human genetics.
2. Recorded interviews with important older workers in the field, both scientists and clinicians.
3. Consolidation of an international network of interested historians and scientists across Europe, through international workshops, an electronic newsletter and a website (genmedhist.net).
The project can be regarded as the first steps towards forming a British human genetics archive, along with a wider international network.
RESEARCH QUESTION
The central goal of this project is to ensure that strong foundations are created for the preservation of the written and oral history of human and medical genetics, to allow future specific research projects in this field. As discussed with staff at Wellcome Trust, this is not a hypothesis driven project, but rather the creation of a research resource as the foundation for detailed research by historians and others. The project may also be considered as the first step towards a British human genetics archive. A wealth of important written and oral material of historical interest is available, but most is at serious risk of being lost unless urgent steps are taken.
WHY IS IT IMPORTANT?
1 The field of human and medical genetics is a key area of twentieth-century science, underpinning many other important aspects of biology and medicine.
2 The practical applications of genetics and medicine have already been great and are rapidly widening to cover all medicine.
3 Social and ethical issues are of major importance and of intense concern in this field. In the past there have been serious abuses, while more recent ethical issues are providing a paradigm for good (or bad if mishandled) practice in many other medical fields.
4 The pace of scientific advance in human and medical genetics is exceptionally rapid. Many major advances still often thought of as recent are now becoming part of history (eg: chromosome diagnosis, isolation of key disease genes).
Documenting the early history of these aspects will allow the patterns of thinking and of practical experimental work to be understood and will also give insights into problems of a societal nature. Finally the UK has played a particularly important role in the area of research in human and medical genetics, and in applications of this through the NHS.
HOW DOES THE WORK PROPOSED RELATE TO THE TRUST’S MISSION?
The proposed research is highly relevant to this mission. It will help to document how numerous major genetic advances have been applied to medicine, how patterns of practice have developed for these applications, and also where serious failures in some cases have damaged the prospects for useful applications.
WILL THE RESEARCH PROJECT REQUIRE ACCESS TO ARCHIVES?
The proposed research is not founded on archives, but will create and bring together a body of material that may well become a specific archive (or series of linked archives) in future. For this reason we have sought the advice from an early stage of Julia Sheppard (Wellcome Library Special Collections), so that material can be collected and preserved optimally and policies developed as to the form of any emerging archive.
Existing archives will be used to a limited extent; eg: personal scientific records of scientists; records of professional bodies, such as British Society for Human Genetics, Genetics Society, Royal College of Physicians; library collections such as John Innes or Wellcome Trust genetics collections. An important aspect of the project will be to link existing archives with new material and to make their existence known to a wider range of workers.
DETAILS OF RESEARCH PROJECT.
The central theme of this project is to take the first steps towards creating a comprehensive archive for British human and medical genetics, so as to provide foundations for future hypothesis led research by the historical and scientific communities. As already noted, and as discussed with Wellcome Trust staff, the project is not in itself hypothesis led research, though it is already starting to generate this through collaborations. Likewise, the project does not itself request support for the creation of a definitive archive, since at present it is not clear what final form such an archive might take, or indeed if a single archive is the most appropriate goal. This should become clear by the completion of the present project.
The principal reason underlying the present project is the urgent need for the written and oral material from the early years of human and medical genetics to be preserved. The reasons for its importance have been given on page 6, but unless rapid action is taken, much of this value will soon be lost. Since genetics is a recent science, essentially spanning the 20th century, much of the primary written record still exists and many of the workers involved are still alive, especially those involved in human and medical genetics, which are mostly post World War Two. This gives a unique opportunity of capturing the full history of the field, but this opportunity is rapidly decreasing as personal and institutional records are dispersed or destroyed because of space shortage and lack of awareness, while the founding generation of workers is now in their late seventies and eighties. An additional factor reinforcing its urgency for this project is that genetics as a science, and in its applications to medicine, has changed and continues to do so at a remarkable rate. This applies both to technology (chromosome analysis, molecular techniques, genome sequencing), to patterns of thought (mapping human genes, cross-species comparisons) and to medical applications, (chromosome and molecular diagnosis, antenatal prediction and other reproductive developments). Thus profound changes have been compressed into a period of 30 to 50 years whose counterparts in other sciences have occupied more than a century.
Although the goal of this project is firmly focussed on preserving the history of human and medical genetics, the proposed work falls into three areas, using different methods. First, identification and preservation of the written records in the field of human and medical genetics, in particular personal scientific records, records of Societies and Institutions, and books. Second, recorded interviews with key older workers in the field. Third, ‘networking’ activities to strengthen links and promote research collaboration between interested historians, scientists and others. These areas are described in more detail below.
The project is based on work done over the past three years by PSH in co-operation with others, which includes initial steps towards the preservation and archiving of key records (in conjunction with NCUACS, Bath University); a pilot series of interviews with human cytogeneticists; and the holding of two international workshops on genetics, medicine and history, as part of the Genetics and Medicine Historical Network. All these activities have received preliminary funding from Wellcome Trust, but more definitive suppot is now required if the work is to progress further.
1. Archiving of Personal Scientific Records.
Over the past two years, contact has been made with a series of older human geneticists regarding the archiving of their records, in conjunction with proposed recorded interviews (see list, appendix 1). In only a few instances have other arrangements already been made. A link has been made with the National Cataloguing Unit for the Archives of Contemporary scientists, Bath University, (Peter B Harper, Tim Powell, see collaboration letter). The extensive records of the late Professor James Renwick are currently being processed, and funding has been obtained from Royal College of Physicians, British Society for Human Genetics, and Genetics Society to allow cataloguing to be carried out on a case-by-case basis. Our own role will be to encourage and coordinate the process, to secure further funding and to provide an inventory of existing and proposed record collections of workers across the UK as a resource for future historians. We estimate that around eight such record collections requiring cataloguing by the Bath unit will be available over the next three years.
2. Other Archival Material.
The interest generated over the past two years is resulting in considerable activity by both professional genetics societies and by individuals, with an increasing amount of material becoming available, including records of societies, correspondence and photographs. To help in this process, British Society for Human Genetics has established a historical interest group, co-ordinated by PSH, with representatives from all branches of human genetics and from Genetics Society.
Our role will be to co-ordinate this process for the UK and to encourage others across Europe to do the same for their own countries. We intend to make an inventory (in part using the genmedhist website) of the available material, but do not plan at present to make Cardiff the centre for depositing original material of this type. We anticipate that before the end of the three-year period a decision will have been made on the need for and possible location of a British Human Genetics Archive, and we plan to facilitate discussions on this.
Julia Sheppard (head of Wellcome Library Special Collections) has kindly offered to advise on archiving aspects, especially on preferred approaches to conservation and storage of records.
We do not intend to focus on eugenics in this project, since this area is already well researched and since the post-WW2 period, with which we are mainly concerned, has few connections to this, though inevitably influenced by past experiences.
3. Photographs and Other Images.
These are becoming available in increasing numbers as a result of growing interest and also from the interviews undertaken by PSH. They will form part of overall archival material, as stated above, but we shall also continue to link closely with Jenny Whiting and colleagues at Wellcome Photographic Library, both for advice and to offer relevant images for this collection.
4. Human Genetics Historical Library.
This was initiated in 2003 following the realisation that many genetics units were disposing of old books and collections because of acute shortage of space. Following a number of ‘rescue’ operations by PSH to retrieve books, a systematic collection of historical (pre-1980) books on human and medical genetics (mainly monographs but also textbooks) has been established in conjunction with Cardiff University’s Special Collections Initiative (Steve Pritchard, Peter Keelan). Provisional basic cataloguing has been done on the collection (now numbering over 500 volumes) and a dedicated lockable room, with study desk and computer, now houses it at Institute of Medical Genetics, Cardiff University. Work to be done as part of the present project, under the supervision of PK, includes detailed cataloguing, to allow searches by genetic topics as well as by authors; linking with other existing collections in UK (eg: John Innes Library, Wellcome Trust Eugenics Society Collection) with the aim of an electronic catalogue covering all major genetics book collections across Europe (eg: Tage Kemp archive, Copenhagen) and America in future. A steering group for the library has been set up, with representatives of Cardiff University Libraries, the Genetics and Medicine Historical Network, Cardiff Institute of Medical Genetics and an external representative, Caroline Moss-Gibbons, head of libraries, Royal College of Physicians (see collaboration letter).
5. Interviews with Early Human Geneticists.
The fact that many of the key workers involved in the founding and development of human and medical genetics are still living, and that a majority live in UK, gives a valuable and urgent opportunity for recording their memories. Ideally this needs an experienced oral historian, but until such a person can be persuaded to work in this field, there is the need for interim work, since many of the subjects are extremely elderly. For the present project PSH will undertake interviews, which will be largely unstructured, though biographical and covering the main areas of scientific work. Although not himself an oral historian, PSH is a member of the Oral History Society, is registered for the British Library course in September, and has 35 years of interviewing experience from a career in genetic counselling. Knowing all the workers involved personally and close familiarity with their research field will also help. These general interviews are designed to form a foundation for future more detailed interviews by specialists in oral history. The project coordinator will be invaluable in retrieving and organising documents and in collating transcripts with papers, photos, correspondence and other material. We are fortunate in having an experienced clerical worker available for making transcripts.
A pilot study of interviews with 12 UK workers involved in the discovery of human chromosomes has already been carried out. (sample transcripts available on a confidential basis on request). Around 40 additional individuals are available and have given permission for interview over the next three years. Consent, copyright and ethical aspects will follow the British Oral History Society guidelines; for the pilot study general consent has been obtained, with further specific consent to be requested for material quoted in publications or electronically.
Dr Soraya de Chadarevian (Cambridge Centre for History and Philosophy of Science) has kindly agreed to advise on oral history and interviewing aspects of the project, while links have been established with the two American groups involved in interviewing US human geneticists, Drs Nathaniel Comfort and Marcia Meldrum (Johns Hopkins/UCLA) and Dr Ludmila Pollock (Cold Spring Harbor)
It is also hoped that the proposed series of interviews will complement Wellcome Trust’s Witness Seminars in this field, led by Drs Tilli Tansey and Daphne Christie, with which PSH has been associated. One such seminar has been held, on Genetic Testing, and a second, on Rhesus Haemolytic Disease, is closely linked, but there is need for further seminars, especially for Clinical Genetics.
6. Wider Activities and International Network Development.
An initial Wellcome small grant and subsequent network grant have allowed a network to be established of interested historians and scientists across Europe, the Genetics and Medicine Historical Network, with a regular electronic newsletter that can also be accessed via our website (genmedhist.net). Lack of a specific project co-ordinator until now has restricted the scale of this, and such a post will allow expansion of this networking to involve more workers across Europe and North America. Already a series of European and American workers have expressed their support for the initiative (see supporting letters from Professor Toine Pieters. Amsterdam; Professor Thomas Soderqvist, Copenhagen; Professor Patrice Pinell, Paris; Dr Helga Satzinger, Berlin (now at University College London); Dr Nathaniel Comfort, Baltimore; Dr Ludmila Pollock, Cold Spring Harbor; Dr Susan Lindee, Philadelphia).
During 2004-5 PSH has been invited to lecture on this subject in a range of countries ( Canada, Denmark, Finland, France, Norway, Russia, Sweden, USA) and has used the opportunity to encourage historians and geneticists in these countries to establish their own historical programmes as part of the overall international initiative.
An important aspect of this networking activity has been the holding of international workshops in 2003 and 2005, supported by Wellcome Trust (see reports, 2003 and 2005 and programme for Brno workshop, attached as appendix 2). These workshops have been enthusiastically received and a third is planned for 2007 (but under the leadership of someone new!). In addition to these workshops a specific historical session was organised at American Society for Human Genetics (2003, Toronto); similar sessions are planned for European Society for Human Genetics in Amsterdam, 2006 (to be led by Professor Toine Pieters) and at the International Human Genetics Congress in August 2006.
The availability of a project co-ordinator will help greatly in these initiatives, so far largely undertaken by PSH alone, and should allow more extensive linking with the international historical research community. Website development will also be an important remit for the post; while the basic structure is established and future institutional support for this confirmed (see supporting letter from Jeff Alderman), updating and making the site more interactive have not so far been possible to the extent wished.
Timetable of proposed work:
This will depend on the appointment date of the project coordinator, but the main steps are shown in the table.
Sources to be consulted:
In contrast to hypothesis led projects which use established specific sources, this project aims to create and secure sources for future workers, in particular the written records of individual scientists and of societies and institutions, along with the recorded interviews with key workers.
A range of sources does already exist, in both Britain and America, though so far few relate to human and medical genetics as opposed to basic genetic science. An important role of the project co-ordinator will be to bring together such existing information by development of our website (genmedhist.net), so that existing archived material can be known and easily available to a wider range of historians and scientists. Examples of major existing sources are the Wellcome Library’s Eugenics Society Collection, the John Innes Archive and the records of American scientists held at American Philosophical Society, also the collected records of UK scientists at various specific universities and the Royal Society.
Dissemination and Academic Output:
Our proposal is not in itself hypothesis driven research, but this should be facilitated, for others and for ourselves, by the bringing together of interested scientific and historical researchers, as well as by the preservation and dissemination of important material. Already our workshops have led to discussions in this direction, while the initiative has generated a new series of historical reviews in the journal ‘Human Genetics’. Specific contributions in the field by PSH are referenced, including the book ‘Landmarks in Medical Genetics’. Two further monographs are in progress: one, a history of early human chromosome research, will be published in 2006 by Scion Press; the other, a wider history of human genetics, is under contract to OUP.
Some of the topics and material outlined here will be suitable for research studentships, either in the history of science and medicine (see collaboration letters from Dr Helga Satzinger, ICL and Dr Roberta Bivins, Cardiff), or in the librarianship and archiving fields. The series of recorded interviews will also be of interest to other workers, both historians and those in other disciplines.
JUSTIFICATION OF RESOURCES REQUESTED. [Provisional]
The principal request is for a project co-ordinator, to support the organisation and continuity of the work. The main duties will include: liaising and corresponding with subjects, Institutions and collaborators involved in the studies; preparing and updating material for the website and newsletter; maintaining a comprehensive record system for the project; helping with the organisation of workshops and lecture material; retrieval of key literature and documents
We are also requesting part time (3 days per week) clerical assistance, the main duties being: transcribing of interviews; direct support for work of the applicants; support and cover for the research co-ordinator when away; care for and filing of documents and correspondence.
