Periodic Reporting for period 1 - B2-InF (Be Better Informed About Fertility. Giving voice to citizens towards improving assisted reproduction technologies for society)
Reporting period: 2020-11-01 to 2022-04-30
There is no universal access to ART. Some countries impose sociodemographic criteria such as sexual orientation, marital status or age for access to ART. For example, in Italy, marriage is required, and in Switzerland a stable relationship is required, whereas in Spain there are no established regulations. Another B2-InF’s assumption is that the incorporation of societal voices in scientific and policy actions will lead to relevant applications of science and governance with regard to ART.
B2-InF estimates that an effort must be made to ensure gender equality when reporting biomedical interventions. B2-InF considers that if the European Union (EU) aspires to a common framework on relevant issues such as ART, it is necessary to study sociocultural differences through both questionnaires (quantitative data) and semi-structured interviews (qualitative data), giving voice to concerns and expectations of citizens towards improving ART for society
The results of B2-InF will be used to provide national and international guidelines for improvements of the information provided by the ART clinics to society, improvements that will be derived from the concerns, expectations, and scientific knowledge of the population as analysed from three different perspectives (sociocultural, legal and gender). With these guidelines, each clinic can be self-evaluated by analysing the extent to which it is open and transparent, and to what extent it is responsive and is adaptive to change. B2-InF also invites reflection on public knowledge and assumptions that will help to shape future research and innovation in the field of ART.
B2-InF gives citizens an essential role in each of its three main steps. In the Data Collection Stage, B2-InF will give voice to the youth-real felt needs and concerns through individual interviews in 8 countries. These perceptions collected will be assembled in various validation workshops and events with the aim of receiving feedback and validating reports. In the Building Guidelines Step, citizens from FE Association in each country, together with youth people involve in civil associations, will be assembled in another workshops and events with the aim of receiving further feedback and validating the national guidelines. Finally, in the Building Awareness Stage international and associations involved in B2-InF will contribute for the dissemination of the guidelines in their respective countries.
The objectives are:
1. Give voice to citizens towards improving ART.
2. Test an innovative co-creation methodology that bridges research communities with the wider public in the area of ART, with the capacity to align research developments with the needs, expectations and values of society.
3. Create a RRI roadmap for ART.
4. Provide information to policymakers responsible for the legal conditions of ART, allowing them to create legislation in line with the citizens’ needs and expectations.
5. Collect, analyse and transfer social scientific knowledge, expectations, and concerns about ART to clinics.
B2-InF estimates that an effort must be made to ensure gender equality when reporting biomedical interventions. B2-InF considers that if the European Union (EU) aspires to a common framework on relevant issues such as ART, it is necessary to study sociocultural differences through both questionnaires (quantitative data) and semi-structured interviews (qualitative data), giving voice to concerns and expectations of citizens towards improving ART for society
The results of B2-InF will be used to provide national and international guidelines for improvements of the information provided by the ART clinics to society, improvements that will be derived from the concerns, expectations, and scientific knowledge of the population as analysed from three different perspectives (sociocultural, legal and gender). With these guidelines, each clinic can be self-evaluated by analysing the extent to which it is open and transparent, and to what extent it is responsive and is adaptive to change. B2-InF also invites reflection on public knowledge and assumptions that will help to shape future research and innovation in the field of ART.
B2-InF gives citizens an essential role in each of its three main steps. In the Data Collection Stage, B2-InF will give voice to the youth-real felt needs and concerns through individual interviews in 8 countries. These perceptions collected will be assembled in various validation workshops and events with the aim of receiving feedback and validating reports. In the Building Guidelines Step, citizens from FE Association in each country, together with youth people involve in civil associations, will be assembled in another workshops and events with the aim of receiving further feedback and validating the national guidelines. Finally, in the Building Awareness Stage international and associations involved in B2-InF will contribute for the dissemination of the guidelines in their respective countries.
The objectives are:
1. Give voice to citizens towards improving ART.
2. Test an innovative co-creation methodology that bridges research communities with the wider public in the area of ART, with the capacity to align research developments with the needs, expectations and values of society.
3. Create a RRI roadmap for ART.
4. Provide information to policymakers responsible for the legal conditions of ART, allowing them to create legislation in line with the citizens’ needs and expectations.
5. Collect, analyse and transfer social scientific knowledge, expectations, and concerns about ART to clinics.
On one hand, we have collected data that allows us to explore the expectations, knowledge and concerns of the general population about assisted reproductive technologies (ART) in 8 countries. On the other hand, we have collected data that allows us to describe the information provided to potential customers and users in specialized ART clinics. This data has allow us to carry out the thematic analysis of the data collected.
In order to do this, we have design one data collection checklist of perception and other checklist for Clinics data collection, both with legal, gender and socio-cultural issues to be considered, in order to development a interviews handbook and Clinics data collection handbook. We have made 98 interviews in 8 countries, which we have recorded, transcripted and translated. We have made a global data collection report, including: 1) context description from each country; 2) sample description from each country; 3) fieldwork description from each country. We have organized 9 validation workshop with citizens in order to validate the global report.
We have collected more than 2000 pages of templates with information of clinics in target countries. We have made a Global data report of clinic, including: context description; sample description, and fieldwork description of each country. With all this information, we have made a Thematical Analisys of Perceptions and of info provided by clinics, identifying information related to health, legal, gender and sociocultural implications.
Although the thematic analysis that has been carried out is the basis on which the content analisys is currently being carried out, and is not conclusive, it has been seen that there is a gap between the information that we have found in the young population Europe, and the information offered by the clinics
In order to do this, we have design one data collection checklist of perception and other checklist for Clinics data collection, both with legal, gender and socio-cultural issues to be considered, in order to development a interviews handbook and Clinics data collection handbook. We have made 98 interviews in 8 countries, which we have recorded, transcripted and translated. We have made a global data collection report, including: 1) context description from each country; 2) sample description from each country; 3) fieldwork description from each country. We have organized 9 validation workshop with citizens in order to validate the global report.
We have collected more than 2000 pages of templates with information of clinics in target countries. We have made a Global data report of clinic, including: context description; sample description, and fieldwork description of each country. With all this information, we have made a Thematical Analisys of Perceptions and of info provided by clinics, identifying information related to health, legal, gender and sociocultural implications.
Although the thematic analysis that has been carried out is the basis on which the content analisys is currently being carried out, and is not conclusive, it has been seen that there is a gap between the information that we have found in the young population Europe, and the information offered by the clinics
The main expected result in B2-InF will be the national guidelines. B2-InF is going to develop 8 national guidelines in order to align the ART clinic’s offer with the perceptions of the young people. The expected impact of these guidelines will be:
INDUSTRY: B2-InF’s NATIONAL GUIDELINES will be conveyed to 932 ART clinics registered in 8 countries (493 in Spain, 354 in Italy, 33 in Belgium, 34 in Switzerland, 1 in Kosovo, 6 in Albania and Macedonia and 5 in Slovenia) to improve the information offered by clinics and to promote their alignment with the concerns of society.
GOVERNANCE: B2-InF will produce POLICY BRIEFS for relevant government ministries in 28 countries, for the Health Policy Platform of the European Commission, as well as for director of the Human Reproduction Team of the Sexual and Reproductive Health section of WHO, and to the European Directorate for the Quality of Medicines and Health-Care (EDQM).
These recommendations will allow political actors at national and international levels to consider the concerns and expectations of society when planning policies related to ART.
CITIZENS: B2-InF promotes the engagement of reproductive science with wider society through alignment of clinical services and information with the knowledge, concerns and expectations of population. These improvements would directly impact the 500,000 Europeans who visit ART clinics annually. Indirectly, B2-InF’s results could also impact 6 million couples who visit clinics annually in developed countries, and 48.5 million people who suffer from infertility problems worldwide.
INDUSTRY: B2-InF’s NATIONAL GUIDELINES will be conveyed to 932 ART clinics registered in 8 countries (493 in Spain, 354 in Italy, 33 in Belgium, 34 in Switzerland, 1 in Kosovo, 6 in Albania and Macedonia and 5 in Slovenia) to improve the information offered by clinics and to promote their alignment with the concerns of society.
GOVERNANCE: B2-InF will produce POLICY BRIEFS for relevant government ministries in 28 countries, for the Health Policy Platform of the European Commission, as well as for director of the Human Reproduction Team of the Sexual and Reproductive Health section of WHO, and to the European Directorate for the Quality of Medicines and Health-Care (EDQM).
These recommendations will allow political actors at national and international levels to consider the concerns and expectations of society when planning policies related to ART.
CITIZENS: B2-InF promotes the engagement of reproductive science with wider society through alignment of clinical services and information with the knowledge, concerns and expectations of population. These improvements would directly impact the 500,000 Europeans who visit ART clinics annually. Indirectly, B2-InF’s results could also impact 6 million couples who visit clinics annually in developed countries, and 48.5 million people who suffer from infertility problems worldwide.