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Innovative changes in biomedicine: integration of sex and gender aspects in research and clinical practice

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In the past ten years my research has concentrated on the innovation of biomedical research practices in terms of paying attention to sex and gender aspects. This article will address the newly gained insights and the innovative knowledge that has been produced.
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Innovative changes in biomedicine: integration of sex and gender aspects in research and
clinical practice
Ineke Klinge PhD
Maria-Goeppert-Mayer Professor of Gender Medicine, Universitätsmedizin Göttingen
Part 1 Introduction
Which innovation and why?
In the past ten years my research has concentrated on the innovation of biomedical research
practices in terms of paying attention to sex and gender aspects. This article will address the
newly gained insights and the innovative knowledge that has been produced.
The innovation of ‘traditional’ biomedicine started with the women’s health movement and
the feminist critique of science in the 1980-s. Involvement with life sciences and biomedical
research is visible in publications as early as Alice through the Microscope by the Brighton
Women and Science group in 1980 which focused on science and women’s lives and where
Alice discovered an amazingly gendered world of science!(Curran & Brighton Women and
Science Group, 1980). A patriarchal science was unveiled that neglected or stereotyped
women’s bodies, health and lives. Soon after pioneering feminist biologists like Lynda Birke
and Anne Fausto-Sterling started academic critiques of biomedicine, addressing biology and
medicine in the first place (Birke & Vines, 1987; Fausto-Sterling, 1985). The strategies they
employed were directed towards the biomedical method itself. Both authors could
demonstrate that the scientific method was not as objective as it was believed to be; instead,
effects of gender were visible in the production of biomedical knowledge. The claim that
processes of gender had an influence on the production of biomedical knowledge at the same
time opened up possibilities for change. Much knowledge that was regarded by feminists as
biology is destiny, turned out to be far from determinist. If taken account of the influence of
gender on biomedical knowledge production, many myths about women and women’s roles
could become dismantled. Although it is a biological fact that only women can give birth to a
child, in no way this is a blueprint for who (mother or father) should be charged with
caretaking during the consecutive years. Within the scope of this article a detailed historical
account of those 29 years of innovation is impossible and I can only refer to Londa
Schiebinger who has twice produced an overview of the feminist involvement with science in
her books Has Feminism changed Science and Gendered Innovations in Science and
Engineering (Schiebinger, 1999, 2008). She has described the various fields in which a lot has
been accomplished in those years including biomedicine. Gender Studies in biomedicine
marks the latest strand of innovative biomedical research: it focuses on gender & health, and
addresses women’s and men’s health issues in research and clinical practice.
End of the one size fits all era
The most concise conclusion of the recent wealth of research into sex and gender in relation
to health and disease is that it signals the end of the ‘one size fits all era’ in which the ‘male
normin biomedicine was not even questioned. Sex and the newly introduced concept of
gender have now been recognised as determinants of health and disease (Bird & Rieker, 1999;
Doyal, 2001; Krieger, 2003; Phillips, 2005; Pinn, 2003). For a good understanding of the
impact of both sex and gender it is necessary to introduce the conceptual distinction between
the two (Health Canada, 2000; Klinge & Bosch, 2005; WHO-Europe, 2001; Wizemann &
Pardue, 2001). Sex refers to biological differences between men and women such as
chromosomes (XX or XY), internal and external sex organs (ovaries, testes) and hormonal
profiles (of estrogens and androgens). Biological sex differences are often viewed as
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dichotomous, either male or female, although actually biological variability can be large
(Fausto-Sterling, 2000).
Gender refers to the socially constructed roles and relations, personality traits, attitudes and
behaviours and values that are ascribed to the two sexes in a differential manner. While sex is
a biological fact that is the same all cultures, what that sex means in terms of gender roles can
be quite different across cultures. To illustrate this Susan Phillips uses the example of
menstruation: all women in the world will at a certain moment in time stop menstruating. The
value attached to menopause and post-menopause however shows a large cross cultural
variation (Health Canada, Gender & Health Collaborative Curriculum Project). The WHO
further elaborates gender roles: they determine differences in opportunities and resources
available to women and men and differences in their abilities to make decisions and exercise
their human rights including those related to protecting health and seeking care in case of ill
health.
As gender processes are at work on several levels, each with implications for health and
disease, the following examples serve to illustrate the health impacts on the respective levels
Gender effects at the individual level: male and female gender roles can influence health
behaviours and as a consequence individual health. It is well known that men delay the
seeking of help from a general practitioner because the stereotypical male gender role
prescribes to be strong, not to show weakness and to ‘tough it out’(Branney & White, 2008;
White, 2001). The presentation of health complaints by women reflects their socialization and
communication patterns between doctors and patients are influenced by gender stereotypes
(Meeuwesen, Bensing, & van den Brink-Muinen, 2002; Roter, Hall, & Aoki, 2002). Gender
role behaviour plays a role in compliance with a treatment (see the example of teenagers and
living with asthma and diabetes later on) and in risk perception, where men and women
express different levels of concern about the same risks and attribute a different meaning to
those risks. This applies to men and women’s perception and fear of disease (Gustafson,
1998).
Gender effects at the institutional level: job segregation along the lines of sex can lead to
differential exposure rates for men and women to different occupational hazards like toxic
chemincals, different ergonomic demands, risk of accidents and psychosocial stressors
(Messing & Mager Stellman, 2006).
Gender effects at the symbolic level: Metaphors used in biomedical textbooks have been
demonstrated to reflect stereotypical gender images. The romantic love between Rambo
Sperm and the Sleeping Beauty (the egg) has been criticized by Emily Martin, and has
induced alternative narratives (Martin, 1991). To portray female biological processes like
menstruation as failed production’ and menopause as ‘the breakdown of nervous control’ has
serious implications for how women experience these processes.
Although conceptually distinct it is of pivotal importance to be aware of the interaction
between sex and gender (see examples later). Within the scope of this article I will focus on
innovations in terms of attention to sex and gender, yet another important insight in
biomedical and public health research is that of interaction between sex, gender and other
dimensions of difference: age, ethnicity, socio-economic status, sexual orientation (Schulz &
Mullings, 2006).
Part 2 Gender knowledge in biomedicine; the example of the EU research policy
Insights into the relevance of sex and gender for health and disease have had far-reaching
consequences for research practices in biomedicine and public health. Because of concern
about the lack of attention paid to sex differences and ethnicity in clinical research, inclusion
rules for women and ethnic minorities in clinical research were implemented by the National
Institutes of Health (NIH) in the USA in 1994 (NIH, 1994). However monitoring studies in
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2000 and 2001 revealed that progress had been made in the recruitment of women but that
data analysis by sex was often absent from the reports (Marrocco & Stewart, 2001; Roth,
2000; Vidaver, Lafleur, Tong, Bradshaw, & Marts, 2000).
In Europe, a window of opportunity for innovation of biomedical practices from a gender
perspective was created when the EU Gender Equality Policy, enshrined in consecutive
treaties, was translated to research. The ‘gender and science’ issue had been seriously put on
the agenda by the European Commission in their Communication Women and Science:
Mobilising Women to enrich European Research (European Commission, 1999). The
communication acknowledged the severe underrepresentation of women in science and, more
importantly, defined the policy task of promoting gender equality in terms of three
dimensions seen as characteristic of the relationship between gender and science: science by,
for and about women.
In 2000 the Gender Impact Assessment Studies were launched and the by, for and about
motto guided the analysis. Seven teams were charged with an assessment of the
implementation of the Fifth Framework Programme for Research (FP5). We ourselves
conducted the assessment of the research programme for the Life Sciences (Quality of Life
and Management of Living Resources) containing large parts of biomedical and health
research (Klinge & Bosch, 2001). The analysis should investigate the participation of women
in FP5 research at all levels and analyse whether the research themes, methods and issues
prioritized in FP5 affect women and men differently.
In executing that study we could mobilize all insights that had been produced by gender
studies scholars and other actors in the preceding years on current biomedical practices. Using
international literature as a resource database, we could demonstrate that the attention paid to
sex and gender in the work programmes and, as a consequence of this, in the funded research
turned out to be fairly limited. Targeted recommendations were developed for the next
Framework Programme, FP6. No surprise that our key message was that sex and gender do
matter when studying health and disease and that they should be addressed when relevant. Or
framed differently: it can not be taken for granted that sex and gender do not matter. Our
recommendations became the basis for the new guidelines for applicants in FP6 in the fields
of health.
With FP6 the by, for and about motto of the EU gender equality policy was changed into the
formula’ GE=WP+GD. The idea expressed in this formula is that the promotion of gender
equality (GE) concerns two issues: The stimulation of women’s participation in research at all
levels (WP) and the consideration of the gender dimension of the research content
(GD)(European Commission, 2003). For the domain of biomedicine and health it was obvious
that the ‘gender dimension’ should be understood as considering the impact of biological sex
differences and the possible effects of gender in biomedical and health research. It became a
leading principle for biomedical and health research under FP6.
The work programme for the FP6 Thematic Priorities ‘Life Sciences, Genomics and
Biotechnology for Healthand ‘Food Quality and Safetycontained specific formulations on
the relevance of sex and gender. “Sex and gender aspects in research have a particular
relevance to this Theme as risk factors, biological mechanisms, cause, clinical manifestation,
consequences and treatment of disease and disorders often differ between men and women.
The possibility of gender and sex differences must therefore be considered in all areas of
health research where appropriate”.
Furthermore, large collaborative projects (Integrated Projects and Networks of Excellence)
had to write a so-called Gender Action Plan (GAP), as part of the proposal, describing the
measures the consortium would take to pay attention to WP and how to consider sex and
gender aspects in research (GD) (European Commission, 2004).
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Issuing (top-down) guidelines is one thing, but what would you have to do if you were at the
laboratory bench, working with the usual technical possibilities of basic science, animal
experiments, clinical testing?? It was not difficult to imagine that researchers would face a
number of challenges (conceptual, methodological, practical or ethical) to integrate sex and
gender into their research and that they might need practical tools and relevant examples. This
caused us to formulate the GenderBasic project, which was funded by the EC in 2005. Aim of
the project was to develop practical tools for the research community. The project consisted of
various activities (see www.GenderBasic.nl):
First running FP6 projects were interviewed on problems or challenges encountered in
executing the (compulsory) gender action plan. Secondly, knowledgeable researchers at high-
level life sciences research institutes (such as Inserm, Charité and Karolinska Institute) were
interviewed on (possibly) existing institutional policies regarding integration of sex and
gender aspects in research. This part of the project aimed at finding out how institutes outside
the realm of EU research policy would practice integration of sex and gender. A major
activity of the project was the commission of review articles on the various methodological
aspects of integrating sex and gender in various types of biomedical and health research
(basic, translational, clinical and public health). Next to that reviews were commissioned on
health conditions that were in urgent need of addressing sex and gender aspects (asthma,
metabolic syndrome, nutrigenomics, osteoporosis, anxiety disorders, work-related health).
High-level scientists were invited to write these reviews offering a state-of- the-art and
solutions for methodological challenges. Comments on these review articles were solicited
from peers. Finally authors, referees and selected stakeholders met during a two-day expert
meeting in January 2007 in Maastricht during which reviews and referee comments were
discussed among the participants. We hosted scientists from a wide range of backgrounds -
basic and clinical researchers, epidemiologists, social scientists and gender experts - who
displayed a great enthusiasm and a real exchange of views took place. For biomedically
oriented researchers the examples on the relevance and explanatory power of gender was an
eye-opener. Precisely the conceptual distinction from biological sex was welcomed, where the
majority of them had become ‘socialized’ in the confusing habit in the biomedical literature to
use the terms interchangeably. Although many efforts by important actors - Institute of
Medicine, WHO and Health Canada - have been made to ‘educate’ basic and biomedical
researchers on this distinction, it was apparent that it had not become standard practice and
that we can only continue to spread the word (Fishman, Wick, & Koenig, 1999; Lorber,
2001). After the expert meeting and publication of the proceedings containing a systematic
overview of the contents of the discussion, all review articles were rewritten for publication in
the Journal Gender Medicine. The final result was a special volume GenderBasic: Promoting
Integration of Sex and Gender Aspects in Biomedical and Health-related Research containing
the 10 reviews on the relevance of sex and gender ranging from new methodologies for the
basic molecular level of gene polymorphisms to the field of health behaviours in public health
and addressing six conditions of major relevance in healthcare. The achievements of
GenderBasic were threefold: 1) it stimulated research into sex differences; 2) it stimulated
research into the workings, mechanisms and effects of gender in particular for understanding
masculinity and male gender roles and effects on individual health behaviour and 3) it
stimulated research into the interaction of sex and gender (Klinge, 2007).
Part 3 Remapping the knowledge field of biomedicine
The innovation, the new way of doing research by taking account of sex and gender aspects
promises a better understanding of health and disease, more evidence based and precise
knowledge, more effective therapies, and better health outcomes for women and men.
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Some of the most telling examples from the GenderBasic project will be described below.
First an example from animal research: Anita Holdcroft suggested to question the relevance of
present-day laboratory models to design methods to best represent the age-related, co
morbidity and variations experienced by each sex in clinical medicine (Holdcroft, 2007). She
called for a determination as accurately as possible of the ovarian cycle phase of female
animals because of varying hormone levels. This is important for detecting small differences
which can have additive effects. and which otherwise would be missed.
A second example comes from research on asthma a chronic inflammatory airway disease. A
well known fact is that asthma has a higher prevalence in boys than in girls before puberty
and a higher prevalence in women than in men in adulthood (Postma, 2007). Asthma is a
complex disease and the relative influence of genetic, hormonal, social and cultural factors
remains to be studied. The review demonstrated that biological sex factors play a role in fetal
lung development. Another study on therapy compliance has described how gender role
behaviour prevents adolescent boys to use their asthma inhalation in the presence of their
peers, in contrast to girls who build their illness into their social life, which enables them to
comply with their treatment regime (Williams, 2000).
The review on osteoporosis offered a good example of how a ‘female disease’ has led to a
considerable neglect and under diagnosis of the disease in men (Geusens & Dinant, 2007;
White, 2008). It represents the reverse of the case of cardiovascular disease, seen as a ‘male
disease’ leading to under diagnosis of the disease in women. The latter phenomenon is called
the Yentl syndrome referring to the fact that a woman has to masquerade as a man to receive
the same treatment (Healy, 1991).
Gender Medicine as an innovation of biomedical and health research has ethical and social
implications. Increasing the quality and quantity of evidence that sex and gender have on
health outcomes and health care will add to a better targeting of medical care at an individual
level. Socially, to ensure gender equity, sex and gender need to be considered in health care
policy (Annandale & Hunt, 2001; Doyal, 2000).
Part 4 Some critical comments
From the perspective of wanting to abolish the ‘white male norm’ in biomedical research
attention to sex differences is a good thing to do. There really has emerged a ‘sexywave of
interest into studying sex differences (which often are still published using the term gender
differences!). However critical points have been put forward too. Looking from the broader
perspective of public health, Steven Epstein in his book Inclusion. The politics of difference in
medical research has argued that a focus on sex differences may lead to dangerously
inaccurate understandings of the causes of health disparities (Epstein, 2007). He believes that
the direct relationship between social class and health status can be obscured by a focus on
bodily differences. He further points to the limits of biological explanations for health
disparities between men and women, with longevity (higher in women) as important example.
It is not biology but social factors that constitute the biggest influence for the difference
between men and women. The aim of public health policies is to target health inequalities.
Epstein identifies two styles/genres: talking about disparities, which implies talking about
social injustice and a call for elimination and talking about differences which implies a more
neutral understanding; differences should recognized, addressed etc. He warns for the risk of
interpreting disparities as differences and illustrates this by an example from molecular
genetic research in toxicology. Causes for ill health used to be looked for and found in the
environment in living conditions, for example living in neighbourhoods close to polluting
industry. Nowadays causes are looked for in genetic susceptibility. The danger is that the
individual gets blamed and that genes are made responsible. The attention to environmental
factors disappears and living in a polluted area is made your own responsibility.
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In my view integration of sex and gender aspects into biomedical research is a sensible thing
to do. I myself like to address ‘what lies beneath’, i.e. biological processes. Next to that,
taking account of gender effects has a big potential if only in explaining epidemiological
patterns of for instance depression or for explaining under diagnosis of women regarding
coronary heart disease or under diagnosis of men regarding osteoporosis (Branney & White,
2008). Finally differences per se are not that interesting, more important is to study how
differences develop and how sex and gender are involved. Both biomedical and public health
research can contribute to redress gender inequities in health and health care (see Lawrence &
Rieder, 2007; Sen & Ostlin, 2008).
Part 5 Feminists and the biological body - uneasy companions?
What lies beneath” can serve as catchword for a discussion on the neglect of biology in
feminist theory on the body. I borrowed this subtitle from the movie, probably known to many
of you (in German: Schatten der Wahrheit) because it fits the contents of an intriguing issue:
the relationship between gender research and biology. It will not go into details of this
discussion, but I will give an evaluation of the lack of addressing ‘what lies beneathin much
feminist theory. The early feminist disgust of biology because of the abuse made of biology to
legitimize social gender roles (biology is destiny) is understandable. But it implied that
biology was left to the traditional disciplinary approaches and that was not a good thing to do.
In 2002 Kuhlmann and Babitsch wrote an article on the neglect of attention for biological
processes in the work of feminist theoreticians but also in much work of women and health
researchers (Kuhlmann & Babitsch, 2002). The first group writes about the body but does not
address biological materialities and the second group has invested more in studying
socioeconomic determinants of health. The feminist pioneers Birke and Fausto-Sterling which
I introduced in the beginning, seem to agree with this lack of attention to the biological that
Kuhlmann & Babitsch identified, and that is visible in their work. Birke boldly states in her
book Feminism and the biological body that feminist theory is only skin deepand calls for
interactive models of causality (Birke, 1999). For Fausto-Sterling biology cannot be neglected
and she found a new approach in the so-called developmental systems approach: the challenge
is to develop an interactive model of how genes and environment come together in the
production of human capabilities (Fausto-Sterling, 2003).
Doing so we can learn to understand how biology and environment work together in
producing strong bones, relevant to osteoporosis research (Fausto-Sterling, 2005). Analysis
from a gender perspective of different types and intensity of exercise in boys and girls can
give clues to differences in bone strength. We can learn to see how genetically determined
differences between men and women but also among women, together with environmental
factors like gender and lifestyle determine the outcome of dietary advice in the case of
obesitas (Ordovas, 2007). It emphasises once more the relevance of studying the sex-gender
interaction and to acknowledge how embodiment merges nature and culture.
This volume brings together Gender Changes in Academia and this article illustrated the
changes in biomedicine. In the last couple of years, sex and gender sensitive research has
expanded enormously worldwide but also in Europe. Specialized centres have been founded
in Berlin, Stockholm and many more are emerging, societies have come into being, yearly
congresses are held and initiatives have been taken to create a joint European Curriculum in
Gender Medicine, attractive to both biomedical and medical students. The
Universitätsmedizin ttingen actively supported a Maria-Goeppert-Mayer guest
professorship in Gender Medicine in the Winter Semester 2008-2009. Summarized: the field
of Sex and Gender in (Bio) Medicine is booming and will only grow in the coming decades.
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... The terms sex and gender are not synonymous. Whereas biological sex is driven by the expression of sexual chromosomes and sexual hormones, gender is related to the sociocultural construct of being a man or a woman in a given society [36]. Here, we use the term "sex" to refer to the individuals in the study identifying their sex as "man" or "woman" at enrollment. ...
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Thesis
L’idea di partenza da cui ha avuto origine il presente lavoro è stata quella di confrontarsicon il problema, secondo una prospettiva sociologica, della disuguaglianza attraverso lacategoria di genere e, specificatamente, nell’ambito della scienza. La differenza del numerodi donne ai livelli apicali (e non solo) delle gerarchie lavorative in ambito scientifico(università, laboratori, centri di ricerca, istituzioni) è un dato inoppugnabile in quantopermane costante nel tempo. Nella nostra ricerca ci siamo posti, dunque, l’obiettivo di indagarei meccanismi attraverso cui le discriminazioni di genere operano nell’universoscientifico. La nostra indagine ha principiato con un’analisi della letteratura che ci hapermesso di comprendere e definire lo stato dell’arte attuale evidenziando un trend cheresta, purtroppo, invariato. Abbiamo, in seguito, studiato e cercato di capire e mettere inluce quali siano le motivazioni e le dinamiche alla base della perdurante condizione dimarginalità in cui versano le donne e, a tal fine, siamo ricorsi allo studio di un caso giudicatoparticolarmente significativo e interessante, rappresentato dal Premio Pour les femmeset la science. I racconti delle vincitrici del Premio, rappresentanza dell’eccellenzascientifica mondiale, ci hanno permesso di raccogliere importantissime informazioni riguardoa molteplici aspetti relativi alle nostre tematiche. E’ stato infatti possibile fare lucesull’impatto effettivo esercitato sulle carriere scientifiche femminili da parte dell’iniziativadella multinazionale e, in particolar modo, abbiamo potuto raccogliere direttamente dallavoce delle scienziate opinioni, visioni ed esperienze significative che ci hanno permesso diapprofondire dall’interno e secondo un punto di vista inedito e foriero di spunti, le tematicheoggetto della presente tesi. In questo scenario, dopo aver delineato l’orizzonte teoricoentro cui dirigere la nostra attenzione, abbiamo dapprima intrapreso un’analisi secondariadei dati e, in un secondo momento, abbiamo elaborato e somministrato alle vincitrici delPremio un’intervista strutturata. Il nucleo centrale della ricerca è costituito, quindi, dallostudio del caso del Premio che ci ha permesso di instaurare un dialogo diretto con quelledonne che sono riuscite a fare breccia nelle potenti mura che da sempre hanno delimitatoil fortino della scienza, permettendoci così di rilevare alcune delle principali dinamicheche possono essere ritenute responsabili delle dinamiche discriminatorie che produconodisuguaglianze nell’operato delle donne. Da un lato, infatti, il Premio indica come la presenzafemminile nell’universo scientifico sia ancora avvertita come un fenomeno non risolto,dunque, per certi aspetti, da porre costantemente all’attenzione, a testimonianza diquanto la parità di genere nella scienza non vada data per scontata, ma sia anzi un obiettivoda perseguire con costanza e determinazione. Dall’altro lato, esso mette in evidenzache la ricerca scientifica è diventata – come la Comunità Europea non ha mancato di sottolinearee come rimarca molta letteratura – un aspetto costitutivo di una società evoluta edelle sue dinamiche economiche e politiche. Possiamo allora chiederci: perché una famosissimamultinazionale che opera nel campo della cosmesi ha deciso di investire in unaquestione apparentemente così distante e lontana dal proprio ambito di intervento nel mercato? Come si colloca il premio all’interno del contesto aziendale? Questi sono alcuni deiquesiti che ci siamo posti e a cui abbiamo tentato di rispondere perché ritenuti imprescindibiliper affrontare in modo il più possibile approfondito il caso studio prescelto
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