GENETICS AND MEDICINE



GENETICS AND MEDICINE

HISTORICAL NETWORK



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NEWSLETTER NO. 6 February 2005

Editor: Peter S Harper (Email: HarperPS@Cardiff.ac.uk)

Introduction

Brno Workshop, May 2005

Report on ASHG Historical Session, October 2004

Updating of GENMEDHIST website

Human Genetics Historical Library

European and British Societies for Human Genetics, Historical Interest Groups

Funding Progress

INTRODUCTION

Welcome to the first newsletter of 2005. Among the points of interest to be found here, the forthcoming second International Workshop on Genetics, Medicine and History, must come first. There are still some spaces free for anyone who has not yet registered for what promises to be a most interesting programme.

Our 2004 event, taking the form of a historical session at the Toronto ASHG meeting, was highly successful and allowed links to be formed with a number of North American historical workers. We hope that a comparable session may be included in the 2006 International Human Genetics Congress in Brisbane, Australia, and are awaiting news as to whether our application has been successful.

Next, our GENMEDHIST website has been updated, thanks to help from colleagues in the Wales Gene Park and Cardiff University Media Resources. We still lack the funding support needed to make it fully interactive, but meanwhile it can carry the images that cannot be placed in this newsletter due to overloading people's e-mails.

On the archiving front, work is now under way at the Bath University National Cataloguing Unit for Archives of Contemporary Scientists (NCUACS) on the extensive records of Professor James Renwick, and it is hoped that further record collections will follow. Please be in touch if you know of any that are in danger of being lost.

The Human Genetics Historical Library is now developing rapidly, thanks to donations from numerous individuals and departments, and to help with cataloguing and curating from the Cardiff University libraries. All donations of books are most welcome!

Finally, both the European and British Societies for Human Genetics have now formed historical interest groups, which will hopefully help to give a more secure basis for our activities into the future. Volunteers to join in the work of the groups are urgently needed!

Peter Harper.

BRNO WORKSHOP. PROGRAMME AND OTHER DETAILS

Many of you will have already received information, but here is the updated programme and some other details. We are fortunate to have a series of major international speakers and a varied and most interesting programme. The social and cultural aspects should be most enjoyable too!

Second International Workshop on Genetics, Medicine and History. Brno, Czech Republic. 11th-12th May, 2005

(Supported by Wellcome Trust)

OUTLINE PROGRAMME (PROVISIONAL)

WEDNESDAY 11TH MAY

9.00am Coach leaves Prague Congress Centre for Brno (for those attending ESHG Congress)

11.00am. Arrive Brno (approx). Hotel Voronez (near Abbey)

12.30pm Buffet lunch in Abbey

2.00pm SESSION 1. Preserving the Records of Human Genetics

Julia Sheppard (Archivist Wellcome Trust, London). The Future of the History of Human Genetics; the role of Archives.

Contributed papers

General discussion on archiving and records

3.30pm Tea/coffee break, followed by tour of Abbey

4.30pm SESSION 2. Oral History and Human Genetics – a discussion session

Soraya de Chadarevian (Berlin/Cambridge; Chair and lead discussant). Interviews as Sources for the History of Science and Medicine

Other discussants including:

Witness seminars (Marcus Pembrey, Bristol)

Interviews with early human cytogeneticists (Peter Harper, Cardiff)

6.00pm Informal reception in Mendel Museum (in Abbey) with introduction to the exhibition by one of Mendel Centre staff.

8.00pm Workshop Dinner at ‘Mendel Cellar’ (close to Abbey and hotel).

THURSDAY 12TH MAY

9.00 – 10.30am SESSION 3. Early Pioneers and Concepts of Human Genetics.

Alan Rushton (USA) William Bateson and Human Genetics.

Soren Norby (Copenhagen) Wilhelm Johannsen and the development of Danish Human Genetics.

Toine Pieters (Amsterdam) Two Centuries of Medical Thought About Heredity and Cancer.

Discussion of posters

10.30am Coffee

11.00 – 12.30 SESSION 4. Human Genetics, Eugenics and Lysenkoism.

Michal Simunek (Prague) Eugenics in the Czech Lands.

Jaakko Ignatius (Oulu) How Eugenics Reached Finland.

Discussion: Lysenkoism and Eastern Europe. Milan Macek Sr, Jiri Santavy (Prague) and others.

12.30pm Lunch

1.30pm – 3.15pm SESSION 5. Historical Aspects of Medical Genetics

Susan Lindee (USA) Provenance and the Pedigree: Victor McKusick’s Work with the Amish.

Patrick Macleod (Canada) F. Clarke Fraser and the Birth of Medical Genetics in Canada

William Leeming (Canada) Development of Medical Genetic Services in Canada and Britain.

Discussion (including some poster presentations)

3.15pm Tea/coffee

3.45pm Discussion on future workshops

4.15pm Close of Workshop

4.30pm Coach leaves for Prague.

Registration Procedure

Registration will be via the ESHG website (); this applies even if you do not plan to attend the main ESHG meeting in Prague.

In order to register, you will need to fill in a 3 digit number, which you can obtain by emailing me (HarperPS@Cardiff.ac.uk). Numbers have been reserved for those who have already notified their interest. If for any reason I do not respond quickly, please email Audrey Budding (Budding@Cardiff.ac.uk).

I strongly recommend that you register as a 'package' - i.e.: meeting, hotel and coach transport - since accommodation in Brno is very scarce on account of a trade fair and the coach will take you from the Prague conference centre on the morning of May 11th, returning in the evening of May 12th.

For those travelling direct to Brno, please note that a new (and very cheap) direct service between London Stansted and Brno has been started by Ryanair.

Our workshop will include a tour of Mendel's Abbey and is based in it; please note that for anyone just interested in the Abbey and Brno, rather than wider historical topics, there is a separate 'post congress tour' being organised by ESHG.

The programme committee look forward to seeing many of you in Prague and hope that a number of you will bring material to present at the workshop. Although the main programme is now fixed (see above) there is still scope for extra contributions as posters and/or the discussions.

ASHG HISTORICAL SESSION, 27TH OCTOBER 2004

The American Society for Human Genetics held a historical session as part of its 2004 annual meeting in Toronto, Canada on 27th October 2004, co-ordinated by the Genetics and Medicine Historical Network. This highly successful event attracted an audience of around 300 people. Below you can see the outline of the workshop (as in the ASHG programme) and also a report on the workshop for the newsletter. A recording has been made and transcripts of the talks will be available.

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HUMAN GENETICS: HISTORICAL ASPECTS

Moderator: Victor A McKusick, Johns Hopkins University School of Medicine, Baltimore

The profound effects of developments in genetics on medicine and many other aspects of life mean that the history of human and medical genetics is likely, in the near future, to be recognised as of the highest importance in both scientific and medical terms, and for society in general.

Human genetics is a relatively recent field, with all of its origins in the previous century, and most in the past 50 years. Since many of the key workers and founders are still living, this gives special opportunities to document the oral history and written sources. Failure to take these opportunities may mean that much valuable material will be irrevocably lost. Indeed, much already has been,

When younger scientists entering human genetics become aware of the history of their field, they learn about major research traditions, experimental strategies, the origins of important methods and instruments, and the culture of science. All these are valuable—perhaps essential—for developing as a scientist. The development of medical genetics has also been greatly influenced by political and social factors in many countries and is thus of great interest for the general public. Further, much recent research is already beginning to become part of history. We must take steps now so that it is documented as such for the future.

While it is vital for us as geneticists to encourage an interest in the history of our own field, it is equally important to involve historians and social scientists in the process; interaction across disciplines helps us to get the facts right, understand the relationships among the dimensions of science such as researchers, funding, methods, and experiments, and to put the whole endeavour into a wider context.

8.00am Oral history and the origins of medical genetics. Nathaniel Comfort, Johns Hopkins University School of Medicine, Baltimore, MD

8.30am Some memories of the early days of The American Society of Human Genetics, the Journal, and its first editor, Charles Cotterman. James F. Crow, University of Wisconsin, Madison

9.00am The genetics and medicine historical network. An international initiative for recording and preserving the history of human genetics: Peter S Harper, University of Wales College of Medicine, Cardiff, UK

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Report, ASHG session, ‘Human genetics, Historical Aspects’, 27th October 2004. Toronto

This was the first historical session to form part of an ASHG meeting and was highly successful. Moderated by Dr Victor McKusick and organised by the Genetics and Medicine Historical Network, it attracted an audience of around 300, despite an 8.00am start on the opening day of the Congress.

Dr James Crow (Madison, Wisconsin) was the opening speaker. With memory and experience dating back to the beginnings of human genetics, he gave a vivid account of the founding of the American Society of Human Genetics, its journal and the first editors, notably the brilliant and highly individualistic Charles Cotterman, who subsequently joined the Madison Human Genetics department.

Dr Nathaniel Comfort (Johns Hopkins and UCLA) presented material from the ongoing American oral history project comparing three of the founding medical genetics departments – Johns Hopkins, Baltimore (Victor McKusick); University of Washington, Seattle (Arno Motulsky) and University of Madison, Wisconsin (James Crow). He showed how the nature of the institutions and the skills and interest of the founders have had a crucial and lasting influence on how medical genetics developed in these three centres.

The final speaker was Peter Harper (Cardiff, UK), who outlined some of the current and developing activities of the Genetics and Medicine Historical Network, including the archiving of Society and individual records, the newly formed Human Genetics Historical Library, a structure for historical interest groups in human genetics across Europe, based on The European Society for Human Genetics, and forthcoming events, notably the Brno workshop in Mendel’s Abbey in May 2005.

The session received very positive feedback from the audience and a number of people suggested that such sessions might form a regular part of the annual programme. It is also hoped that a co-ordinated American historical initiative, based around the considerable existing interest and activities, can be developed alongside and linking with that in progress across Europe.

UPDATING THE GENMEDHIST WEBSITE

Genmedhist members will realise that the website has been ‘inactive’ for some months owing to our lack of funding support, but now this has changed, thanks to help from Cardiff University Media Resources (Jeff Alderman) and the Wales Gene Park (Martin Strawson), as you can see if you look at .

We are now able to put on new material, especially images (which we cannot include in the Newsletter), so all contributions are most welcome. You no longer need to log in to the website, unless you are one of the editors.

Help in editing and developing the website further will be much appreciated, so if anyone has the skills and enthusiasm for this, your newsletter editor, who is not expert, would very much like to hear from you!

HUMAN GENETICS HISTORICAL LIBRARY

Cardiff University has now formally agreed to support this as part of its Special Collections Research Initiative and this should mean both increased professional time in cataloguing and more security for the project. A steering committee is being set up and progress will be reported in the next newsletter.

Meanwhile we have a physical location for the Collection (see the website) and a rapid growth in donations. A notable addition is a complete bound set of ‘Treasury of Human Inheritance’. The Panum Institute, Copenhagen, has also kindly donated an extensive series of the Tage Kemp human genetics monographs.

We are most grateful to all donors, and new additions of all types will be welcomed. People have enquired about the scope of the Library; at present this is confined to books, not unpublished records, but theses are included and very welcome, as are long runs of early genetics journals.

HISTORICAL INTEREST GROUPS – BSHG AND ESHG

The last newsletter gave details of the newly formed ESHG Historical Interest Group. This group is now trying to find and collect as much information as possible relating to the formation and early years of the Society, so please look around for any photos letters etc that you may have.

British Society for Human Genetics (BSHG) has now also formed a comparable group, with each of the main component organisations represented. Current members are:

Association of Clinical Cytogeneticists: Rod Howell

Association of Genetics Nurses and Counsellors: Margarethe van Mourik

BSHG: Julian Sampson

Cancer Genetics Group: George Fraser, Anneke Lucasson

Clinical Genetics Society: Peter Farndon

Clinical Molecular Genetics Society: Su Stenhouse

Genetics and Medicine Historical Network: Peter Harper

Genetics Society: John Armour

Each member is trying to ensure that the early records of its particular society/group are as complete as possible.

Do all other countries have such a group? It would be interesting to know details. If your own country does not, why not set one up through your local society? This could then link in to the ESHG Group

PROGRESS WITH FUNDING

No, we haven’t been awarded a major grant yet! But we are still trying hard for this and I am sure will get there one day.

Meanwhile we have been awarded several small grants for specific items, which are much appreciated. These include:

Wellcome Trust. Workshop grant to support Brno meeting.

Wellcome Trust. Small grant for continued support of the Network.

Royal College of Physicians, London, and British Society for Human Genetics. Donations for archiving and interviewing in relation to Fellows/members.

All further suggestions for funding are very welcome.

FURTHER CONTRIBUTIONS TO THE NEWSLETTER

Many newsletter editors end up writing most of it themselves, but it would be good to have more (much more!) coming from others, so please send in your news, however trivial! There must be a lot happening that at present is going unrecorded. The same applies to the website, which can also carry images.

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