Breaking the Silence around Infertility: A narrative review of existing programmes practices and interventions in low and lower-middle income countries
Prepared By: Hilde Kroes, Maria Siermann, Ronja Jansz and Trudie Gerrits
Commissioned by Share-Net International as input for the Co-Creation Conference of 2019
9th September 2019
THE SHARE-NET INTERNATIONAL CO-CREATION CONFERENCE “ENGAGING IN
KNOWLEDGE TRANSLATION TOGETHER”
Share-Net International (SNI), the Knowledge Platform on Sexual and Reproductive Health and Rights, hoste its first annual Co-Creation Conference, “Engaging in Knowledge Translation Together” from 8 to 10 October 2019 at the Impact Hub in Amsterdam, the Netherlands. It was a working conference in which participants developed concrete and evidence informed knowledge products that will be used for influencing policy and practice at country level. The conference had two tracks: 1) Breaking the silence around Infertility and 2) Access to quality sexual and reproductive health and rights (SRHR) services for people affected by conflict, fragility and crisis. All participants of the conference, including researchers, practitioners and policy makers engaged in dialogues and worked together for the creation of these knowledge products.
Members of Share-Net International in Netherlands, Jordan, Burundi and Bangladesh selected the topic of infertility as a neglected area in SRHR. The SNI Community of Practice (CoP) on Infertility was tasked to furtherdevelop the ideas for this track. SNI commissioned the University of Amsterdam to conduct a Narrative Review. This review aimed at identifying existing interventions related to infertility, and determining the main gaps in infertility policies, programmes and interventions, and in the integration of infertility in SRHR programming, with a focus on low and lower-middle income countries (LLMICs). The CoP identified four main issues as priorities: 1) breaking the silence on infertility in policy and practice, 2) prevention of infertility, 3) access to quality (in)fertility care, and 4) de-stigmatisation of infertility and childlessness.
INFERTILITY: AN INTERCONNECTED, BUT NEGLECTED, PHENOMENON
Millions of people worldwide are affected by infertility. Every individual has the right to plan a family, to
decide on the number, spacing and timing of their children and to have access to information and services that enables them to exercise these rights. However, people suffering from infertility very often do not see these rights realised, even though information and services exist. It is a matter of reproductive justice, but it is not often seen this way. There are political, ethical, gender justice, inequality, visibility and knowledge gaps in addressing infertility.
Many governments in LLMIC are concerned with population growth and emphasise access to
contraceptives. Global donors have funded large contraceptive programmes which emphasise the political discourse of encouraging people to have less children, instead of supporting people’s right in deciding the number, timing and spacing of their children, including people who wish to plan a family but cannot (Inhorn 2009).
Governments that do facilitate access to ARTs often do this from a pro-natalist view. The advocacy for and provision of access to fertility care and ARTs are important to guarantee the universal right to health. However, a narrowed focus on access to fertility care and ARTs may emphasise the dominant norms on the importance of motherhood. It can increase stigma of people who are infertile and/or childless. Therefore, access to fertility care must be accompanied with advocacy and messages that address patriarchal and socio-cultural norms that undermine women’s rights.
It is a concern that fertility care in LLMICs is mainly available through the private sector and rarely through the public sector. It involves the commercialisation of – mostly – women’s bodies, who have every right to be able to have a family but need to pay exorbitant prices for ARTs and other fertility care. As a CoP on Infertility member from Bangladesh put it: “Infertility is a huge booming business”. While it is positive that is infertility care is available, access is far from universal and equitable with only those who can afford the high costs obtaining it.
Involuntary childlessness is a social phenomenon and it affects different people in society; women, men,
Lesbians, Gays, Bisexual and Transgenders (LGBT), (aspirational) single parents and people with disabilities. Infertility is sometimes classified as a disability, as an impairment of function generated by a disease (and infertility is clinically classified as a disease). While there are strategic reasons for that which will be presented in this paper, it can also be stigmatising to people who are not infertile and, in that sense, not disabled, but are involuntary childless nonetheless. Their right to have a family is surrounded by ethical and political deliberations, which impede their access to assisted reproductive technologies, including gestational carriers.
Infertility is an invisible and highly tabooed phenomenon and rarely discussed. While a large number of
(mainly qualitative) studies have given ample insight in the socio-cultural and psychological dimensions of infertility and its impact in people’s daily life (see e.g. Inhorn & van Balen, 2002; Van Balen & Bos, 2009; Van Balen & Gerrits 2001; Gerrits & Shaw 2010), limited quantitative data exist. Infertility has different impacts on men, women, people with diverse sexual orientation and gender identity and people with disabilities. As described above, there are political and ethical considerations that push addressing
infertility into the margins. And lastly, there is lack of understanding on how cross-cutting infertility is as atopic and how it touches upon global concerns:
Addressing infertility is about rights. It is part of the reproductive right to be able to decide freely
and responsibly the number, spacing and timing of children and have the information and means to
do so, and the right to attain the highest standard of sexual and reproductive health. (In)fertility
implicates multiple human rights including the rights to plan the timing and spacing of children, to
benefit from scientific progress, to health, including SRH, to non-discrimination, as well as informed
consent and confidentiality.
Infertility and unwanted childlessness occur everywhere in the world, regardless of gender,
geographical location, socio-economic status, race, sexual orientation, disability, gender identity or
(reproductive) age, but the response to it demonstrates huge inequities – which is often referred to
as stratified reproduction (Colen 1995; Gerrits 2015). This is most evident in the wealthier people
being able to obtain quality information and services at high costs, as well as inequitable laws that
define who can have access to assisted reproductive technologies or third-party reproduction, and
who cannot.
Furthermore, even though both men and women can face fertility problems, the burden of
infertility falls predominantly on women. This can result in violence and discrimination against
them, perpetuating persistent gender inequality. Other inequalities are also persistent, with people
facing infertility or childlessness being stigmatised, excluded or discriminated against in families
and communities.
Infertility is a public health concern, it is linked to maternal health and morbidity, to sexually
transmitted infections and HIV and AIDS, to unsafe abortions, to menstrual health and
discontinuation of contraceptive methods, to reproductive conditions and diseases such as
endometriosis and cervical and reproductive cancers.
Infertility also has economic dimensions: people facing infertility tend to spend much of their
income on their search for adequate fertility treatments. Also, the burden on the health system is
high, resulting in sometimes unnecessary surgeries and treatments and going from one provider to
the next. Furthermore, childless individuals and couples face economic difficulties at an older age,
without children taking care of them.
Lastly, there is growing evidence that environmental (such as exposure to chemicals and pollution
and hormonal intake) and life style factors (such as food, smoking and alcohol use) can lead to
infertility.
In conclusion, addressing infertility involves addressing structural issues such as patriarchy,
dominant norms around gender and sexuality, privatisation and health, life style and
environmental issues. Hence, responses to infertility require multidisciplinary approaches while
being cognisant of the structural, social, cultural, medical, political and ethical dimensions that
surround infertility and childlessness.
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Read the full report presenting the findings of the narrative review here.
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