Access to assisted reproduction in Europe

2022

Access to assisted reproduction in Europe

Country/area: Spain

Organisation: Civio (main publishing org), El Confidencial, VoxEurop, Internazionale, Euractiv, etc.

Organisation size: Small

Publication date: 02/11/2021

Credit: Eva Belmonte, María Álvarez del Vayo, Ángela Bernardo, Carmen Torrecillas, Antonio Hernández, Olalla Tuñas, Miguel Ángel Gavilanes, Lucas Laursen, László Arató, Giorgio Comai, Elvira Krithari, Álvaro Merino, Taja Topolovec

Biography:

The Civio Foundation (Fundación Ciudadana Civio) is an independent, non-profit organization based in Spain which monitors public authorities, reports to all citizens and lobbies to achieve true and effective transparency within our institutions. We work for the following: to achieve free access to the information generated by them; to understand how they make decisions; to have public policies based on evidence; to succeed in the public sector being held accountable; and to facilitate action and public participation. The levers we use to achieve these changes are journalism and innovation. We are a multi-disciplinary team of 10 (journalists, computer programmers, and experts in communications and marketing, institutional relations and business development) with international patronage and an advisory board committed to improving democracy.

For this investigation, we have partnered with the European Data Journalism Network (EDJNet), a network of independent media organisations and data newsrooms producing and promoting data-driven coverage of European topics in several languages. The network brings together journalists, developers and policy experts. As in this occasion, we have the opportunity of working in collaboration with colleagues from several countries; a cross-border team of data journalists, graphic designers, developers and communicators all together.

Project description:

The number of babies born through assisted reproduction is increasing. In Europe, there are countries where 5-8% of births are through artificial insemination or in vitro fertilisation. However, there are people in many countries that do not have access to these treatments. Those who can afford it travel to other countries to circumvent these vetoes. Civio has led a cross border journalistic investigation into the problems of access to assisted reproduction in 43 European countries. The work shows the discrimination that many people still face in accessing reproductive health care because of their sexual orientation, marital status and other conditions.

Impact reached:

Differences in access to assisted reproductive technologies (ART) across Europe are large. Sometimes there are even serious differences within a single country. However, there is one kind of discrimination that happens to repeat itself in a large number of countries: legal barriers prevent LGBTIQ+ people from accessing ART. For instance, 24 European countries ban access to ART for female couples and the situation is even harder for trans and intersex people.

How to pay for it is the other biggest issue, as the investigation reveals. Countries such as Ireland and Switzerland do not cover ART techniques at all, while others pay only part of it. Waiting lists are the main problem with publicly funded ART, since they are years-long in many countries. As a result, thousands of people have to resort to so-called “reproductive tourism”, if they can afford it.

The series is composed of three long form articles: two of them, originally published in Spanish and English, about Europe; the last one, published in Spanish, covers the differences within regions in Spain. The cross-border articles have already been translated to six languages and distributed through the network, reaching a broader audience (difficult to quantify). We have counted at least 14 re-publications by European media as in Euroactiv, Il Post, Internazionale and El Confidencial, among others.

We aim not only to make the audience aware of the difficulties of accessing ART, but also making governments accountable when it comes to discriminating collectives such as LGBTIQ+ people or single women. Although the EU has no jurisdiction to regulate these matters and political and cultural sensitivities are still very different, we intend to share our findings with the Commissioner of Human Rights of the Council of Europe and the Ombudsman of the EU to help collectives whose rights are being infringed.

Techniques/technologies used:

The article for this application covers the differences in access to ART (assisted reproductive technologies) in 43 European countries. In general, extra attention was put to make the information easily comprehensible to a general audience. The database was built almost from scratch with the help of some members of the European Data Journalism Network.

The main innovative component is the interactive visualization that maps the main barriers that narrow access to ART treatment. Readers get customized information adapted to their personal situation or marital status (i.e single woman, woman in a female couple or woman in a heterosexual one) and age through an avatar that accompanies the whole piece as a “sticky” element, allowing the user to change the profile while navigating through the different topics of the piece and therefore experience different scenarios.

The visualization covers what the legislation of each country says about what can or cannot be done and what part is publicly funded by the national health service through general cartogram maps designed to give an overview pattern despite each country’s actual size, plus extra detailed information presented visually when clicking on each country. Detection of the reader IP location was also implemented in order to highlight the user’s country (if physically in Europe) along with the whole piece.

In addition, several static visualizations were included along with for clarification purposes, adding context to the main piece. All of them are responsive, adapting to the different device sizes including small mobile displays, and are easily embeddable in multiple languages through Iframe HTML code.

All the visual elements have been developed entirely in the JavaScript D3.js library on the Observable platform through different modular notebooks that were combined all together in the main visual piece.

What was the hardest part of this project?

Discrimination faced by many people in Europe is a reality in access to health care. In this work, we initially relied on data compiled by the European Society of Human Reproduction and Embryology to find out what barriers exist in access to assisted reproduction. However, the Civio team carried out a thorough verification work to check and update the data from the most important European countries. This involved corroborating current legislation (sometimes in other languages), contacting dozens of sources and health ministries.

In addition, we tried to find personal stories that conveyed the discrimination suffered and the problems faced by thousands of people in assisted reproduction. Our idea was to contextualise the data we found so that readers could empathise with the barriers faced by many people in Europe. Emotionally it was hard work to learn about the problems faced by LGTBIQ+ people and single women, but we believe that their first-person experiences are invaluable in understanding this issue.

Another major problem was the lack of reliable data on some of the issues we addressed, such as reproductive tourism. This forced us to make an intensive search in the scientific literature on the studies carried out and to consult multiple sources in order to give an updated, rigorous and truthful perspective on this sensitive topic. We also sought out patients who travelled to other countries to tell us their stories and the problems they had in accessing assisted reproduction. It was not always easy to find these personal stories as there is still a sense of shame and stigma attached to talking about it.

What can others learn from this project?

When we talk about discrimination, we often imagine very harsh situations of inequality. However, there are also examples of discrimination in everyday life, such as access to health care. In this journalistic investigation, Civio has shed light on how certain groups in Europe are discriminated against in access to assisted reproduction, even though discrimination on the basis of sexual orientation and other personal circumstances, such as marital status, is prohibited by law.

In addition, another lesson from this journalistic work is the importance of verifying and contextualising the data used. In the field of assisted reproduction, national legislation in European countries has been changing rapidly in recent years. The legal analysis of the main European countries has also helped us to extract data and information very relevant to this journalistic investigation. To do this, it is very important to have specialization not only in data journalism and investigative journalism, but also in the complex administrative language, often bureaucratic and complex for the general public. Furthermore, it is very important to translate technical concepts and ideas related to the topic, such as the techniques currently used in assisted reproduction, in order to provide clear and rigorous information.

The reader is the center of the story in the visualization of the data in this investigation. To include all the complex information from so many countries in a simple infographic has been one of the most challenging parts of this publication. Also, having in mind that this is a sensitive issue. We, as a team, worked together since the beginning of the investigation and the developers were also part of the expert and patient interviews.