Patient experience and Co-Creation in Health

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Anthropology and assisted reproduction

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At the End of March, the chair “Human Fertility” of the University Alicante and the IVF-Spain Foundation organized a scientific update on latest techniques in Human Reproduction. The director of the Chair, María José Gómez Torres, invited first class experts, such as Dr. Jaime Gosálbez, one of the world best specialists in the area of male gametes and Pedro González of the “hospital de la Fe”, who spoke about the molecular aspects of human reproduction. Different topics were discussed, for example the natural method of egg cell stimulation, different methods of the assisted reproduction or genetic diagnosis and the application of the Time Lapse Technology. birthin4cultures

Professor Gómez Torres didn’t limit the clinical and scientific conferences to one topic, but expanded the horizon for social, legal, sociological and anthropological aspects.

Assisted reproduction: a social revolution, which challenges what we view as granted
In this sense I was asked to make a speech about anthropology and assisted reproduction and I felt honored. Anthropology is a good tool, in order to see how social and organizational changes work, is allows one to see things that are not obvious.

Anthropology research in the human reproduction field shows three very different things: first and foremost a change in the entire western family concept. Our society comes from the roman law, based on lineal family connections, blood relation and the transmission of traits of origin of parents onto their children: an own family is created out of a couple. When a couple comes together they a political family is incorporated, which also works on consanguinity ties. In many cultures kinshp is not built necesarilly upon blood relation (e.g. in Sudan and many other cultures in North America).

In Western countries this consanguinity kinship has been broken due to the introduction of fertilization via donor sperm and eggs. A child can have therefore biological parents and social parents, which until now was only possible in form of adoption. This distinction of biological and social parents creates a new family constellation, for which no social category yet exists. Therefore they are called by sociological descriptions, usually very politically correct: such as monoparental families, LGBT families, substitute motherhood…

New family models

Assisted reproduction makes it possible for couples ages 38-40 to still conceive a child, which changes the classical sociology of parenthood as well as established roles. Furthermore it makes it easier for divorced couples to get children with new partners, which is called assembled family. The social impact of older parents cannot be underestimated: the main effect is that the social and psychological pressure to form a family decreases and that the time in which we still feel young enough increases by 10 years. This social effect has an obvious economic impact: it facilitates a whole generation to spend money on consumption and spare time for 10 years longer, instead of spending it on education, household, savings and other aspects, connected to parenthood.

This tendency intensifies due to another reproduction technology: the fertility preservation. A young woman of about 25 can freeze her eggs and can use them in an older age, after she finished education and has a permanent job and partner. The eggs she uses then, are still the young eggs of a 25 year old and will be still reproductive. 

 

 

The paradox of the assisted reproduction: less children and aging of the population
All that has however not lead to more births, but paradoxically to even less. Since 1978 five million children have been born, connected to assisted reproduction. Together with the increasing life expectancy the decision of conceiving a child can be delayed. The so called best prepared generation is not aware that the ovary reserves of the woman decrease by half soon after 3. In school sex education is taught, but no one mentions reproduction. Only 2% of all Europeans have children by assisted reproduction, while a whole 15% is infertile. The rest simply has no access to reproduction treatments, simply due to high costs. Although the success rates are quite high: a 60-70% success rate means a 30-40% failure, thus a high percentage of population that will not have children.

Therefore the assisted reproduction delays the choice for conceiving children, but when the moment comes they find themselves not being able to conceive out of clinical or financial reasons. In either case is this a hypothesis, which needs deepening and is working material for young scientists. wombs

Reproduction tourism: economical drawbacks and inrush of tourists
When debating about assisted reproduction, many think about inrush of patients, who go abroad due to what different national legislation allow. Sexuality and reproduction are not only biological facts, Of all human activities they are perhaps the ones with the highest emotionally and symbolica charge and the closest link with cultural and social values.

This is exactly why country has another legislation: some allow In-Vitro-Fertilization, but no egg donation, others allow surrogacy. Gamete donation is anonymous in some countries and in other it is obligatory to make the identity of the donor public. In some countries the identification of the sex of the child is allowed. There are differences as well concerning genetic examinations for embryos (pre implantation). There are countries were except for IVF treatments everything is prohibited and others where everything is allowed. Birenbaum-CarmeliKin

These differences attract patients from their own countries to others, where certain bans do not exist. Europeans therefore often come to the USA for surrogacies, while Americans go to Canada out of cost reasons. In Germanic countries and Italy an egg donation is prohibited. Consequently there is a flourishing medical tourism in Spain and Eastern Europe. The biggest point of attraction for medical tourists however is the Iran. The Shi´ah allows egg donation, while the Sunnites prohibit this, which attracts a lot of couples from the Gulf states.

Another form of reproduction tourism, which already reminds of organ trafficking and exploitation, is the clinic coming to the patient instead of the patient or donor coming to the clinic. Michal Nahman has investigated some practices of fertility clinics in Israel and describes that some Israeli employers order cheaper eggs with the European phenotype from Romania. In Romania young women are asked to donate their eggs as a source of income. After extracting the eggs these are sent to Israel.

These practices suggest that borders do not exist. But actually the contrary is true, the walls are high with small holes, where only rich people can escape through. Of the 80 million couples in the world who have fertility problems, the majority does not have the money for an access to fertility treatment. The border lays, like in many other areas as well, in the Sahel zone. Feldman-Savelsberg mentioned that where the tropical and the Sahara Africa meet there is an invisible belt of infertility, as well as of malaria, sleeping sickness and poverty in general. A belt though which every day anew those people cross, we see jumping across the fences of Melilla.

Social stigma
The infertility in those countries is a big problem, because it is stigmatized. A woman that cannot conceive children in a natural way, is excluded from the public life by many cultures, like Marcia Inhorn indicated. In Turkey, where the belt of infertility does not apply, the pressure is so high that couples strive for a separation after three years without a child, describes Zeynep Gürtin. The masculine infertility does not exist: it is invisible. It is connected to impotence or associated with  “not being a man .

A medical-technological complex
If there is such a big demand, not in poor but in wealthier countries, why are the treatments not cheaper? To answer this question, one has to understand that the assisted reproduction is not entirely the business of private clinics (around 800 in Europe, of which alone 200 are in Spain). The barriers for the market entry are high, but not exaggerated high, because in 5 years the investments could be cancelled. 800 gynecologists are not a sufficient lobby -even considering big clinic chains belonging to finance groups- to prevent the entry of new market players with a low-costs strategy.

As Sarah Franklin showed in many ethnographies of assisted reproduction, that artificial reproduction is a medical-biotechnological complex (hereby she uses Einsehower’s metaphor of the military-industrial compelx), in which many IVF-clinics are market access vectors, for instance for the necessary medication for ovarial stimulation, for IVF technologies like cryo-storage of gametes and embryos or for pre-implantation tests and now preconception tests as well.

If the prices do not decrease, it is because the participating stakeholders are aware of the fact that the dream to become parents is so valuable for the 15% of the western world, who suffer from infertility, that the wealthiest 2% are ready to pay as much as the poorest 80%. It seems as if there was an unwritten pact, not let the prices decrease: everyone knows that a price lowering strategy would mean the end of a lucrative business.

plataforma tecnológica FIV

Economy, family structures and medical technology
At the beginning of this post we saw that medical technology has created new family structures. The contrary is also correct, the new social demand causes that companies of medical technology invest more into research, e.g. the preservation of fertility. However one cannot understand the situation, if we do not take into account how much the world of labor and in general the economy have changed in the last 40 years. The 1960s witnessed the massive entry of women in the labor market (in both world wars they did already work in industries) and during this time the anti-baby-pill arrived on the market: this changed the family structure immensely, while it had been changed before already by the industrialization. The impossibility, that several generations would live together –as they did in peasant times- in urban flats, meant the end of the extended family, the pill meant the birth of the modern nuclear family. These families, who owned more resources, did give the consumption economy wings, and also the consolidation of new business branches, connected with the leisure time offer and the service economy.

Sarah Franklin

Sarah Franklin

In the 70s and 80s politics started the deregulation of the state in the economy and with it came the so called globalization. Industry disappeared as an economic basis of the Western countries and also the quality of working situation has deteriorated, without that the tendency changed. The consequence: the entrance into the job market is delayed, because one has to study longer in order to get a good job, if possible one has to excel even more (with a master for example); at the same time it takes much longer to reach financial stability, while young adults accept one tenuous position after another. Stability (fixed income and adequate home) is nothing a couple can achieve with 28, but with 38 years nowadays. As well as with the arrival of contraceptives, it seems that technology appears just at a time ripe for egg donation and many genetic tests to avoid the possibility for malformation, which are caused by age and ripe too for preservation of eggs, so that young women, who know that they want to have children at a later age, can still get pregnant.

At last – another hypothesis which needs examination – it seems possible that greater problems at the labor market have a kind of influence in a couple’s stability (along with a number of many other factors, as e.g. longevity, new social roles of men and women, new legislation of homosexuality, parenthood of single persons, etc.; this is a more complex topic than the mere instability of jobs), so that the tendency of break ups of families, which existed before, could be increased by these factors.

What do we observe? That that what we understand as family is inserted in a triangle; the three angular points are the economy (production process, sort of job, sort of consumption), the kind of sexuality and the kind of reproductive technologies. It is the interaction of these three elements, which generates the sort of social reproduction, we call family.

How do we apply this anthropological knowledge about reproduction
In general for professional doctors and reproduction professionals many of the described social factors are known.Yet many professionals are unconscious of many others of the described facts, such as the belonging to a medical-technological complex, which determines on a big scale how they present themselves on the market, or also, that their medical practice of bringing children to the world could paradoxically lead to less children been born.

In any case, anthropology definitely helps to understand that sector. Even if it looks as being far away from the ordinary daily life problems of a clinic, anthropology has many areas of application: the improvement of the patient experience or the creation of new clinical areas of application. Especially when using patient driven innovation and co-creation methodologies. But because I outwent the recommended length of a post, I will prepare a specific entry about patient driven innovation and co-creation in assisted reproduction.

 

 

Autor: Carlos Bezos Daleske

Siento curiosidad por todo lo relacionado con personas y organizaciones, especialmente en salud. Me gusta trabajar con personas y con su capacidad de innovación y co-creación. www.iexp.es I feel very curious about everything related to people and organizations, especially in healthcare. I enjoy working with people and their ability to innovate and co-create. www.iexp.es

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