Introduction

It is now 50 years since the founding of the European Society of Human Genetics (ESHG), and the story of its origins and of its development into one of the world’s most active and influential scientific and medical bodies in the field of genetics is an important one for all those working in human genetics today. It is also in some ways an unusual story, with a number of aspects not fully told until now, so its 50th anniversary seems an appropriate time for this to be put on record. I shall focus here on the first 25 years of the Society’s existence; an account of more recent activities will be given in a future article in European Journal of Medical Genetics. Information can also be found on the ESHG website (www.eshg.org), which now in addition hosts the website of the Genetics and Medicine Historical Network (www.genmedhist.org).

A short note on the beginnings of ESHG was published in the European Journal of Human Genetics by Renwick and Edwards,1 but the most detailed account is provided by the retrospective lecture of Jan Mohr, without doubt the key individual in the early development of ESHG. This was given at the Society’s 1993 meeting in Barcelona, soon after Mohr had stepped down as the Society’s Secretary, but it was not published and so is not generally available. However a transcript of the lecture is in the Copenhagen archive of Mohr’s records,2 which contains a considerable amount of information on the first 25 years of the Society’s existence and which has been one of the principal sources for the present article.

Documenting the beginnings and the early development of ESHG for the present article, requested by the ESHG Board, has been based on a variety of written and oral sources. For the Society’s first 25 years, covering the period 1966–1991, we are fortunate that it was in effect entirely run by a single individual, Jan Mohr; that his correspondence and records were meticulously organised, and that they have been largely preserved and catalogued as part of the wider Tage Kemp Archive, forming part of the Danish National Archives. Despite its apparent security, however, this archive was seriously neglected in recent years, and suggestions that it might be disposed of entirely were only avoided by the perseverance of one or two staff of the Copenhagen Medical Genetics Institute. These risks now seem to have been avoided, and renewed interest, including research for the present article, has led to re-cataloguing and conservation of the entire collection, of which material relating to ESHG forms only a small part.

At the time of the founding of ESHG, the only truly international body in the area of human genetics was the five-yearly International Congress of Human Genetics, whose first meeting was held in 1956 in Copenhagen. The well-established American Society of Human Genetics, established in 1948 (http://www.ashg.org/pages/about_history.shtml), with its annual meetings and regular Journal, also played an international role to some extent, while there were several European-based journals (eg, Annals of Human Genetics, formerly Annals of Eugenics). However there was no pan-European organisation specifically dedicated to human genetics, so it is not surprising that, as scientific life across the continent began to recover after war-time devastation, a number of European workers in the field saw the need for a specifically European Society. Moves towards this began to take shape during the third International Human Genetics Congress, held in Chicago in August 1966.

Founding of the society, 1966–1967

The formal date on which the European Society of Human Genetics was founded was 15 March 1967, as described in the initial Bulletin of the Society and reproduced in the 1995 note on the Society’s founding by Renwick and Edwards, along with a list of members of the initial Board.

Reprint of Announcement of 15 March 1967 (sent to medical and some other journals):

‘The European Society of Human Genetics’, initiated during the IIIrd International Congress of Human Genetics in Chicago, 1966, is now established.

The aims of the Society are to promote research in human genetics including basic genetics and genetic pathology, and for this purpose to create and maintain personal contacts between human geneticists in Europe.

The Society gives initiative and support to arrangement of at least one symposium a year, to cover a limited topic and to be given usually by a small group of invited speakers; in addition there may be special study groups. The first symposium will possibly be in October-November, 1967, as a long week-end arrangement, and will, like the organization of the Society in general, be given a very simple form. Further information about the character of the Society may be obtained from any of the persons listed below, who constitute the responsible board.

A ‘Bulletin of the European Society of Human Genetics’ will later keep the members informed.

The immediate steps leading up to the foundation were also noted by Renwick and Edwards

‘The decision which led to the establishment of the Society was taken at an informal meeting of European participants at the 3 rd International Congress of Human Genetics in September 1966. The meeting was called by one of us (JHR) as a result of a conversation during the workshop ‘The Use of Computers in Human Genetics’ held at Ann Arbor at the end of August. In the course of a country walk near Ann Arbor, we discussed the fact that European human geneticists seemed most often to meet each other in the United States, and that a European Society might enable them to meet each other more easily in Europe. We resolved to air the suggestion at the forthcoming Chicago Congress.

As European participants to the Congress will remember, a notice was put up inviting everyone from European countries to attend a meeting chaired by Prof RL Kirk, at that time employed by the WHO in Geneva.

Among those involved in the Chicago meeting was Jan Mohr (Figure 1), who also remembers Lars Beckman (Sweden) and GP Anders (Netherlands) as being especially supportive.3

Figure 1
figure 1

Jan Mohr, 1921–2009 (date of photo uncertain). Courtesy of Professor Hans Eiberg, Copenhagen (few photographs of Mohr seem to exist; the author would be glad to know of others).

The Chicago meeting decided in favour of forming a European Society and elected a committee, to be chaired by Jan Mohr, that was broadly representative of countries attending the Congress. This then met in Copenhagen on 21 January 1967, where the board membership was confirmed and extended to include countries not present in Chicago (see Table 1). It is relevant that these additional members were co-opted by the Board, not officially nominated by the country concerned.

Table 1 The Original European Society of Human Genetics Board, 1967

The original ESHG constitution

A constitution for the Society was also drawn up at this time. This was originally published as part of the Society’s first Bulletin (see Figure 2), prior to its initial congress in Copenhagen in November 1967, together with background notes written by Jan Mohr. Statutes 1–3 are perhaps the most important and are given here:

  1. 1

    The name of the Society is: ‘European Society of Human Genetics’.

  2. 2

    The aims of the Society are to promote research in human genetics including basic genetics and genetic pathology, and for this purpose to create and maintain personal contacts between human geneticists in Europe.

  3. 3

    The Society gives initiative and support to the arranging of at least one symposium a year, to cover a limited topic and to be given usually by not more than half a dozen invited speakers as regards the symposium proper, and to comprise facilities for possible subsequent meetings of special study groups.

Figure 2
figure 2

Front page of the first (1967) ESHG Bulletin.

Members and guests of members may attend these symposia, upon payment of a special entrance fee, and participate in discussion following presentations by the invited speakers.

A few changes were made in the following years, the only one of substance being that the post of secretary should be permanent, rather than change annually as in the initial constitution.

It might be asked why Copenhagen and Jan Mohr were chosen as the focal point of the new Society. In fact the choice was a natural one, especially given that there were very few European centres for human genetics of any size or significance at the time. Not only had Copenhagen hosted the first International Human Genetics Congress, under Mohr’s predecessor Tage Kemp, a decade previously in 1956, but Jan Mohr had just been elected as chairman of the Committee for Convening International Human Genetics Congresses. More prosaically, Mohr states (2005) that while two other centres had initially offered to host the Congress, both had pulled out, leaving Copenhagen as the sole remaining candidate.

Up to this point the story of the Society’s beginnings sounds orthodox and much as might be expected for any new scientific society. But Jan Mohr’s notes and correspondence in the Copenhagen archive make it clear that this was far from being the case. The character of the newly formed ESHG was in fact formed as much on the basis of what it should not be and do, as on what it should.

Thus, at the original 1966 Chicago meeting and the subsequent January 1967 committee meeting in Copenhagen:

‘After having considered advantages and disadvantages of various traditional types of organization, including a Federation, the committee found, that a traditional type of organization, although easy to initiate, should be rejected as being functionally too cumbersome, not practical in view of political subdivisions in Europe, and in view of heterogeneity as regards degree of development of human genetics, and as implying risk of an undesirable future development such as congressional elephantiasis, politicking or both.

The question whether a European Society of Human Genetics, in the traditional sense of the term, should be established, should therefore…..be answered in the negative.

However, the committee was unanimous, on that occasion in 1967, in finding communication between human geneticists in Europe insufficient, both between institutes and individual workers. To remedy this, it was decided to try a somewhat untraditional approach, which although requiring some care to establish, would later imply a minimum of organizational work—and still, in the opinion of the committee, be capable of giving efficient and continued service in the required respects’. 2

Mohr reinforced his own views in an interview recorded in 2005 with the author:3

‘You see at that stage I had very clearly in mind the first International Congress of Human Genetics in Copenhagen, and I happened to see from close range the kind of destruction it wrought on the Institute, because the staff was not very large and Tage Kemp took on an enormous project. They didn’t do anything, you know, for a couple of years and it was politics and fund raising and there were all kinds of disagreements, so at that stage when Medical Genetics in Europe was not very strongly developed quantitatively, I felt it could be a disaster if we should have that kind of thing every year somewhere in Europe. Maybe that was part of the reason I emphasised the frugality and simplicity, even if part of the cost was that it was not very democratic’.

Thus, from its inception, the principles of simplicity, frugality and limitation of activities were built into the Society’s constitution and ethos, reflecting the views of most of the founders, especially Jan Mohr, who over the next 20 years was resolute in upholding them. It should be noted that Mohr freely admitted that this model was not a democratic one, and that it might need revising in the future.

The early meetings

The first ESHG Congress was held in Copenhagen from 18th to 19th November 1967. In his Welcome Address to the Congress, Jan Mohr again stressed the importance of limited aims and simple structure for the Society:

‘Ladies and Gentlemen,

Let me wish you all warmly welcome. It is a pleasure that so many distinguished colleagues and friends have been able to come, to this our first Symposium of the European Society of Human Genetics.

The aims of our Society, as given in the Statutes, are to promote research in human genetics including basic genetics and genetic pathology, and for this purpose to create and maintain personal contacts between geneticists in Europe; and a major means towards these aims, would be Symposia like the one we are trying to arrange.

Given a large and in several respects heterogeneous group of people, like the European nations, it is not altogether easy to define and maintain a sound course for a Society with the stated aims. We all know of organizations that may be considered warning examples.

There is, for instance, the danger of hypertrophy, which may easily become so pronounced as to defeat the very purpose for which the Society was established, and hypotrophia would not be desirable either. Together with the other members of the Board, I hope we have succeeded, at least to some measure, in establishing a useful structure of our Society.

…..In making arrangements for the present Symposium, we have felt that the aims of the Society would be best served by setting a precedent for simplicity… We hope that this simplicity will be found convenient and agreeable. And with this wish our Symposium is officially opened’. 4

The topic ‘genetic polymorphism in man’ was the principal theme of the Symposium and the first invited speaker was Elizabeth (Bette) Robson of London’s Galton Laboratory with the title ‘The genetics of placental enzymes’.

The second, 1968 meeting was held in Paris, where the theme was meiosis. Correspondence in the Copenhagen archive shows that there was some grumbling about Jerome Lejeune and a few other invited speakers giving their talks in French;

Mohr, with his typically dry sense of humour, refers to this in his Barcelona lecture.2

‘In the original statutes of the ESHG we took care of the language problem by letting the choice be entirely free, but that the Society would not supply any kind of interpretation or translation service; and that was in practice the same as saying the language should be English (ie, except for Jerome Lejeune)’.

There seems to have been general agreement, though, that the scientific standard of this and indeed of all these early meetings was excellent, and that the primary aim of providing a forum for European human geneticists to meet was being amply fulfilled.

The third meeting, in April 1969, was held in Liverpool, organised by CA Clarke and DA Price Evans; not surprisingly Rhesus isoimmunisation and other immunological topics such as HLA and transplantation were prominent; the programmes of these early meetings often emphasised the research interests of their host institutions and gave the opportunity for younger members to present their work and form international links.

Table 2 lists the locations and themes of these meetings for the first 25 years. A complete list to the present can be seen on the ESHG website. The draft of Mohr's 1993 lecture to the Society in the Copenhagen archive contains further details on individual meetings for those interested.

Table 2 ESHG meetings, the first 25 years

Other early activities

Apart from the annual Board meeting, held at the Society’s Congress, there were few other activities (it should particularly be noted that there was no general business meeting of the members as a whole until 1988). After discussions at the board meeting in 1977 two working groups were set up, one on genetic counselling services in Europe, chaired by Maria Matton (Gent); the second on the teaching of genetics in medical schools, chaired by Christos Bartsocas (Athens). The first of these resulted in a report which was discussed at the board, but which seems not to have been published or otherwise disseminated, though the Board minutes mention that it had been shared with World Health Organisation; a copy of the summary and conclusions is in the Copenhagen archive, but it is not clear whether the full report was finalised. It is of interest, in view of the subsequent development of specialist genetic counsellors, that genetic counselling was presumed, at least in the summary, to be the responsibility of workers trained in both medicine and medical genetics.

The second working group, on the teaching of medical genetics across Europe, produced a questionnaire that was circulated to members but apparently without further action. The only other activity outside the annual meeting was a decision to join the Committee for Convening International Human Genetics Congresses, whose sole function was to choose the venue for the next International Human Genetics Congress (Jan Mohr was also Chair of this committee). Otherwise, no other specific activities seem to have been undertaken until the structure of the Society was changed in the early 1990s.

The Bulletin of the Society (Figure 2), in existence from 1967 to 1974, contained, apart from the initial constitution, the abstracts of papers presented at the meetings, but little else. From 1975 these abstracts were transferred to the journal Clinical Genetics (also produced in Copenhagen and with Jan Mohr chief editor), and the Bulletin was discontinued. Its circulation during the brief time of its existence seems to have been strictly limited to members. Archived correspondence shows numerous requests for copies from libraries and institutions around the world, but all were refused, with a standard letter from Jan Mohr stating that:

I am sorry to inform you that the Bulletin is only available for members of European Society of Human Genetics. However you are welcome to be a member of the Society, and the cost of membership is $6 a year. You will then receive the Bulletin automatically.

With hindsight it is unfortunate that this opportunity to raise international awareness of the new society should not have been taken up; it is hardly surprising that the bulletin never achieved a high profile and did not survive for long!

The ‘minimalist’ concept of ESHG’s early years was reflected strongly in its organisation; it was essentially entirely run by Jan Mohr from his medical genetics department in Copenhagen. The correspondence between 1967 and 1992, housed in the Copenhagen archive, is extensive, mostly relating to the planning of congresses, but with some correspondence on wider issues with colleagues such as Kare Berg (Oslo) and Charles Ford (UK). Few of these topics seem to have been discussed at the annual Board meeting, whose minutes are likewise mainly concerned with the annual congresses.

Finance was a frequent topic of correspondence, dealt with mostly by Jan Mohr’s departmental secretary. Despite keeping the annual subscription remarkably low (42 Danish Krone or 7 US dollars), unchanged for more than 20 years, the Society seems to have remained in profit throughout this time and there were even surplus funds at one point, invested in Genentech shares. The reason behind this successful low-budget operation was that the Society actually spent almost nothing. The annual Congress was expected to be self-supporting, as set out in a letter of 13 June 1977 from Jan Mohr to Professor W Schmid, in relation to a proposed meeting in Zurich:

As to financial matters, our previous symposia have been largely economically independent, that is, the costs have been largely covered by the symposium fees..... the members do not expect any posh arrangement. On the contrary, when we were charged with founding the society, we were asked to make it frugal and as simple as possible, one reason being that it should be cheap for the participants, another that the host should not burden his institute unnecessarily with organizational work. 5

In relation to this last point, Mohr, as mentioned previously, had painful memories of the 1956 International Human Genetics Congress, when the research of the Copenhagen department, then under Tage Kemp, apparently almost came to a halt for the preceding 2 years.

Regarding other expenses, the abstracts of presentations formed part of the Journal Clinical Genetics after 1975, while the Bulletin had been discontinued from this year, leaving only secretarial time and postage costs.

Initial membership of the Society in 1967 was 174, with 95 people attending the Copenhagen Congress. Thereafter it rose to 282 in 1972, but declined in the 1980s before rising sharply from around 1990 when the Society’s structure was changed. A low membership did not necessarily affect attendance at the meeting, since non-members could attend for the same price and might have considered that there was nothing extra to be gained by actually joining the Society.

While the initial simple structure of the ESHG had worked efficiently as long as the holding of an annual congress was its only activity, it seems that concerns may have been raised as early as 1977, when the two working groups mentioned earlier were set up, in particular a long letter to Jan Mohr from Kare Berg (Oslo). An interesting single page note also in the archive, dated 7 February 1978, written by Jan Mohr, reflects his concerns and suggests simplifying the structure of the Society still further, almost to the point of abolishing it:

‘Proposal towards simplifying the ESHG

  1. 1

    The major purpose of ESHG is the arrangement of Symposia, and our activities could well be limited so as to make this the only function.

  2. 2

    It would then perhaps be unnecessary to have any secretariat and any society at all. It might be better to have only a permanent Symposium Committee, and then dispense with the collection of membership fees.

  3. 3

    Each year, the obligation of giving a symposium would be delegated to the next host, and all responsibility concerning his symposium would then, financially and formally, rest with the next host.

  4. 4

    The Board would then have the function of a symposium committee, and would consist of ex officio members (former symposium hosts) and possibly some additional members supplied by self-recruiting.

  5. 5

    The advantage would be simplification and some economy.

Mohr’s philosophy is further reflected in the additional points of his note:

  1. 1

    A possible disadvantage would be, that some people would say: Now we don’t have any ESHG, let us make one. This would probably give us a traditional society, quite expensive, with some trappings, presidents, secretaries etc etc—just the thing we decided we would not have when the society was founded in Chicago.

  2. 2

    Accordingly, an important (concealed) function of the present society is in fact, the prevention of a society of the heavy, undesirable type. A serious question is, if the mood of our members still is such, as not to wish for a heavy society. If only one member of the Board wants a society of the heavy type, it may be difficult to avoid its coming into being, because movements towards poshness are kind of self-enforcing.

  3. 3

    Conclusion: If it is possible to make the present state extremely simple and easy to manage, I may be willing to carry on. If not—ie if we are not able to make the fee-collection etc practically unnoticeable and if more internal trouble should turn up such as committees for this and that—I would probably propose the modification of the present society into a simple European Committee for Yearly Symposia in Human Genetics’.

Whether Mohr’s note was ever shared or circulated is not clear; most likely it was written for himself. Whatever the case, his firm stance had the effect of putting off any further discussion of change for another 10 years.

A movement for change, 1988–1992

By 1988 it was clear to many members that the original model was unsustainable. Both membership and meeting attendance had been declining, the Board members (whose tenure was lifelong) were increasingly elderly, and there was no incentive for younger workers to become involved with the Society, despite the rapid developments across Europe that were occurring in all aspects of human and medical genetics. At the 1988 Board meeting in Cardiff (where the author was chair of the Congress), a business meeting of all the members was proposed and held, which resulted in spontaneous expression by numerous members of the need for major changes. These suggested changes were summarised in a letter from Peter Harper to Jan Mohr and the Board; this, along with further correspondence from others, notably a long and detailed letter from Kare Berg (Oslo), is in the Copenhagen archive.

These possible changes were taken up the following year (May 1989) in Groningen, under the chairmanship of Charles Buys, when the Board decided to form an ‘investigative committee’ (perhaps an unfortunate term, ‘explorative’ might have been more appropriate, since there had been no implications of criticism and its remit was to look to the future, not the past), to make recommendations for new statutes; members of the committee were C Bartsocas, C Buys (Chair), M Fraccaro, PS Harper, J Mohr, A de Paepe and E Passarge. These statutes were duly approved the next year, 1990, at the meeting in Corfu, and implemented in 1991 at the Leuven meeting, when the first elected president (Giovanni Romeo) took office. Key changes were limited terms for all Society officers and direct involvement of the membership in the structure of the society. Successors to Jan Mohr as Secretary General have been Eberhardt Passarge, followed by Jean-Jacques Cassiman, Peter Farndon, Helena Kaariainen, Gunnar Houge and Karin Writzl.

Thus by 1991, when Jan Mohr stepped down as Secretary, the society had come full circle to reach the ‘conventional’ situation which he and other founders had fought so hard to avoid at its inception in 1967. As he graciously acknowledged in his 1993 valedictory speech at the Barcelona meeting:

‘And so we arrived at the Leuven Statutes under which we live today. I feel they are reasonably good statutes. They are at least conventional and not unusual at all, like the rather undemocratic and somewhat constraining Copenhagen Statues were, as were supposed to be’.

‘We must accept that the dam is broken, so to speak; we cannot any more to any extent count on sufficient premises within the frame of our Universities or Institutes, but have to accept reliance on external resources such as hotels and commercial congress organizers, and we have of course to accept the much higher costs under these conditions’.

Mohr still seemed somewhat sceptical of the new statutes, however.

As to differences between the original statutes and the present ones, it is of course the original ones that were deviant from the common kind, while the new ones are rather conventional. The original statutes aimed at a strict focusing on what we considered—and I’m sure we still consider—the core task of the Society…………….and pains were taken to find such a format that this could be achieved with an absolute minimum of administrational work and social fuzz and trappings; while the new ones have a somewhat wider aim, so as supposedly to give better possibilities of certain political endeavours such as taking stands as a Society (perhaps patenting of DNA sequences, legislation regarding prenatal diagnosis and selective abortion etc). By the new statutes officers are also more visible and circulating more rapidly, and they are more richly titled (President, Past-President, President-Elect, General Secretary)—while with the old statutes all these came to be more or less lumped under the title Secretary.

Mohr’s skill in organising clearly had deep roots too.

I went through some very yellowed papers the other day, far older even than the ESHG, it was from when I was 12 years old. Then I discovered why the new statutes appeared so familiar. Because they have an uncanny similarity with the Statutes of a Society where I was the first Chairman at 12 years of age. It was the Sporting Club Quick, or Kjapp in Norwegian.

Mohr’s lecture was accompanied by numerous slides, mainly related to the various meetings of the Society; unfortunately these seem not to have survived, but it remains possible that they still exist somewhere. The Copenhagen archive contains a number of drafts, a sample of one being given in Figure 3, which shows the thought and work that Mohr put into preparing the talk and reflects his meticulous nature. It is a pity that the lecture was not published.6

Figure 3
figure 3

Draft page of Jan Mohr’s valedictory speech on the history of the Society at the 1993 Barcelona ESHG meeting, showing Mohr’s meticulous approach in preparing this and other documents (from Tage Kemp/Jan Mohr Archive).

The changes in the Society described above had immediate effects which began before the new constitution was formally adopted. A strong sense of enthusiasm and optimism resulted from members being able to feel that it was ‘our Society’, rather than simply a private club for older members. As Mohr himself stated, ‘The dam is broken’.

Conclusion A renewed ESHG

It is easy, with hindsight, to be critical of Jan Mohr’s restrictive and somewhat autocratic role as permanent Secretary of ESHG during the first 25 years of its existence. However the Society’s unorthodox structure did have some real advantages, especially during the early years of its development. The emphasis on ‘frugality’ was a considerable advantage to younger members, especially those without institutional support, as well as to those coming from East European countries with restrictions on currency conversion. Likewise Mohr’s strong disapproval of the Society taking ‘stands’ on controversial issues avoided any polarisation on politically sensitive issues; it should be remembered that eugenic abuses were still very recent, abortion was still illegal in many countries, while the persecution of geneticists in Russia and other countries that had been dominated by Lysenkoist doctrines had only just ceased. It is relevant in this respect that the additional board members chosen at the initial 1967 committee meeting were co-opted by the board, not nominated by their host country.

The first 25 years of the ESHG, as described here, have been very different to the early years of most scientific societies. It is true that most of these are strongly influenced by the work and character of a few key founders, but there cannot be many where the initial constitution and early development have so strongly stressed the limitation rather than proliferation of its aims and activities, and where this has been adhered to so faithfully for such a prolonged period.

The succeeding article on the history of the ESHG, covering the second half of its existence, will show how extensively the character and scope of the Society have changed since its renewal in 1992. In part this reflects the fact that its nature is no longer determined by a single individual, but by a group with differing backgrounds, skills and perspectives, which changes its composition regularly, and which is interactive with its membership.

The renewed ESHG also reflects the continuing growth of human and medical genetics internationally to become a central part of science and medicine, and indeed of society as a whole. The ‘wider activities’ discouraged by Jan Mohr are now too numerous and important to be ignored and if ESHG itself had not taken them on, it is very likely that other, quite possibly less suitable or experienced, organisations would have done so.

Although I doubt if anyone today would advocate returning to the ‘minimalist’ role for ESHG advocated by Jan Mohr and the other early founders, it seems to me that it is worth standing back from time to time and asking what we can learn from these early years of ESHG. For this reason, if for no other, it is important that the Society’s history is fully documented and its records securely archived. We have been fortunate that the Copenhagen archive has achieved this for the first 25 years of ESHG’s existence, but a carefully considered plan is needed for its more recent history and for the future. The present 50th anniversary is an appropriate time to undertake this.