Gender Action Plan
Participation of women in the European Leukemia Net
- Lead Participants 17 %
- Participants 22 %
- Experienced researchers (minimum 4 years after graduate or having a PhD) 40 %
- Early researchers (less than 4 years after graduate) 57 %
- Overall 36%
The way, by which clinics and research are run in Europe, has traditionally been a men's affair. Gender balance is not yet achieved at the student, M.D. or Ph.D-in-training or assistant-professor level. In contrast, despite lacking representative statistics in the field of hematology, the general impression that women are severely underrepresented in strategic decision-making, planning or top research positions in most European countries appears well justified.The reasons are manifold but likely are rooted in deep seated cultural resistance against the evolving roles of gender per se in modern society.
The call is for all European institutions - particularly those operating in the public sector - to consider strategies for women to gain equal access to resources, security and enpowerment and to devise an agenda for action-oriented research. Promotion of talented women researchers (resources of half of society yet obtaining 10% or less of top positions), would achieve better understanding, better health outcome and probably better response to the interests and concerns of the population as a whole.
The European Leukemia Network is aware of its influence for a change of clinical practice by fostering new ideas and closer attention to everyday life of people, both women and men. The Network’s Steering Committee will ensure a policy of supporting the promotion of women scientists on each level within the subnetworks. This means that female students and scientists will be encouraged to take part in projects and that experts will take responsibility to support participation and integration of women. As major tasks of their Projects the lead participants Dr. Ute Berger for NMC and Dr. Nicola Gökbuget for ELIC, will assume responsibility for integration of gender related issues and -research within the European Leukemia Network. Dr. Berger and Dr. Gökbuget will act as network’s Commissioners for gender policies.
Surveys concerning female physicians/researchers in the network
One important aim of the ELIC (Project 2) is to generate electronic questionnaires to collect information on:
- Characteristics of female scientists/physicians answering the questionnaire
- Professional perspectives, qualification and educational opportunities
- Employment and livelihood patterns, social and cultural practices
- Access to support services
- Support for female careers / for aspiration of leading positions
- Concepts for combination of family life and profession e.g. part-time work, day-care of children, return to professional life after maternity leave / children education
Results of these questionnaires will be provided to all network projects in order to adapt strategies for promotion of females if necessary.
Furthermore, ELIC will suggest a wide range of positive action measures to achieve gender-balance:
- Identifying and transfer of pioneering models in Europe
- Collaboration with women support organizations
- Collaboration with other networks
- Spread gender specific information contents: besides discussion forum and funding opportunities etc. attention will be paid to leukemia specific topics
ELIC will also place a focus on gender-related information contents, which shall be provided on this website such as:
- Fertility preservation: Whereas widespread information about fertility preservation of malepatients is available, far less is known about this issue for females. By specific information sheetson the website actual information on these questions will be provided for physicians and patientsin cooperation with specialised gynecologists.
- Hormonal disturbances after chemotherapy: Information will be provided in order to increaseawareness and improve therapeutic interventions.
- Leukemia in pregnancy: Although a rare condition all over Europe certainly a significant numberof women develop leukemia in pregnancy. Experience with different types of leukemia, treatmentschedules, time of pregnancy and outcome will be combined with general information on thisissue.
Participation of Women in the Projects.
One third of the Projects (6 out of 18) have a female lead participant. Women are also represented as participants in all Projects. Project 2 predominantly involves female participants. If additional staff for the project is required, the following procedure is used at universities in Germany and is suggested for use in other European countries. Advertisements for all new employees contain the following passage: "Females are explicitly encouraged to apply for this employment. In case of equal qualification, females are preferentially employed". This procedure has been proven successful in the past. In advertisements women who return to professional life after children education will be explicitly encouraged for application. Furthermore, for all new jobs within the project the possibility of part time employment and flexible working hours will be offered. This is highly compatible with the necessary work. Also online work from home could be considered in special cases.
Differences in Human Biology between Men and Woman
Gender Research Focus
Only little is known about gender related differences in the field of hematology. Most information relates to the longe vity of women as compared to men. Leukemias that have their incidence maximumin older age tend to have female predominance. In CML the male to female ratio overall is 60:40%. Inpatients older than 60 years the ratio is reverse, being even more pronounced in higher age groups. Male CML-patients have significantly larger spleen sizes which, however, have no impact on survival.The incidence of ALL similarly shows a male preponderance. Whereas in childhood ALL (<10 years), the incidences within males and females are nearly equal, there is male preponderance up to 3:1 inadolescence and adults and an equal distribution in patients older than 80 years. The difference in adult age is mainly related to the steeper increase of incidence in males than in females. In addition, there are even greater differences of gender specific incidences in subtypes of ALL, e.g. ahigh male preponderance in T-ALL. These differences can only be concluded from study groups, but not from epidemiological registries, since details of subtypes are not available in registries. A variety of potential factors have been sporadically reported and could be associated with gender specific differences and incidences of all leukemias such as occupation (e.g., reported excess mortality of female hairdressers from non-Hodgkin's lymphoma and lymphoid leukemia), infectious agents, hormonal influences, genes on Y or X chromosomes, chromosomal aberrations (female predominanceof trisomy 8) HLA system (e.g., gender differential disparities of minor histocompatibility antigens), psychosocial factors (e.g., coping techniques), pharmacokinetics of cytostatic drugs, availability ofstem cell donors.Most of these questions are not addressed in clinical studies and none has been demonstrated to be relevant so far. Therefore an important goal of the leukemia network will be to combine information on gender specific differences and to consider these issues for specific risk projects. Correspondingly all leukemia Projects will address gender specific issues as special objectives.
Literature data are showing that for children with ALL the outcome is influenced by gender. Boyshave a poorer outcome than girls. Reasons for that difference are in part the poorer outcome of boys with testicular involvement, the higher testicular relapse rate but also the higher rate of bone marrow relapses which may arise from minimal residual disease in testis. This may be translated to gender specific treatment approaches such as prolonged maintenance therapy in males, intensified use of high-dose methotrexate etc. It is so far unknown whether there is a difference in the cure rates with respect to gender for adolescents (a very important age group), adult or elderly ALL patients. Enforced by this research program, a reanalysis of a large cohort of adult ALL patients was started in 2002. Unexpectedly, in this cohort the outcome for female adolescent and elderly ALL patients was inferior. These results have to be confirmed or extended to a large data set as available in the European Leukemia Network.An attempt has to be made to investigate the underlying mechanisms and circumstances, e.g. biological and prognostic markers treatment feasibility and compliance, availability of stem cell donors and hopefully arrive at effective prevention measures and devise gender specific guidelines.Also transplantation outcome is influenced by gender issues since the combination female donor malerecipient has the poorest outcome. This is attributed to the sensitization of the HLA system by previous pregnancies, probably also by blood transfusions.
Long-Term Side Effects and Survivorship Research
Little is known about the late effects of therapy of adult ALL and in particular on gender related differences. This may include for instance fertility, bone density, hormonal disturbances, incidence of secondary malignancies, or quality of life. The network will aim to increase the awareness of these issues and to support projects in the field.