In September 2012 the first DC offspring, two sisters, waved goodbye to their anonymity when they participated in a short TV-documentary. Not only did they go public with their story, they also dared to hackle the current policy on fertility treatments with donor gametes in Belgium and defended the right of all DC offspring to know from whom they descend.
One of the sisters created a Facebook page called ‘Donorkinderen België’. It would become the first platform for Belgian DC, making it possible for offspring to come in contact with one another. They also started to collect, investigate, and share information with others and reached out and connected with other national and international organizations, institutes, offspring, parents, donors, experts, …
Uniting forces with other DC offspring, DC organizations, parents, donors, experts, politicians, … led to some great initiatives and achievements. With hard work and good investigation we were able to get several official questions asked in our National and European Parliament. An official inquest was submitted by us regarding the lack of donor register and the false registrations of fertility treatments executed by clinics and doctors.
Apart from helping DC offspring, parents and donors, we dedicate our time in organizing gatherings, informing, building bridges to other international and national organizations, press coverage, participating in researches and student essays and conducting a political lobby to change the current law.
Biggest media achievement:
In 2012 a huge scandal came out: the Nordic Cryo Bank had worldwide supplied sperm of a donor who was carrier of the genetic disease NF1. When in 2009 a first child was diagnosed with the disease and reported, they waited 6 months before they alerted all the clinics and banks that had been supplied with this sperm. At first, our government and fertility doctors denied any Belgian involvement in this case.
In June 2013, with the help of Danish mothers, we revealed that the first child diagnosed and reported with the genetic NF1 disease – from Nordic Cryo sperm donor 7042 – was a Belgian child. We kept digging and found out that in total 20 children were conceived in Belgium with 16 mothers. Out of the 20 children, 7 were tested on the disease. Three of them have the genetic disorder. Nationalities of mothers who became pregnant in Belgium are: Belgian, British, German, French and Dutch. To this date, the amount of DC offspring from this donor reached 99.
The case of NF1 allowed us to get the attention of Europe. Official questions were submitted and an inquest has started concerning the failing of the Rapid Alert System, leading to an evaluation and adjustment of the European policy regarding the trade in donor gametes.
Goals and nuances:
- We want to inform and connect DC offspring, parents and donors but also to create public awareness regarding the complexity surrounding donor conception.
- We want to contribute as a stakeholder in the political debate and put an end to a law where the human right of knowledge on genetic heritage isn’t automatically granted to the DC offspring.
- We strive for the self-determination of every DC to know who they descend from and creating a possibility for half siblings to find one another. The choice of knowing and finding (or not) should be ours.
- Due to the fact that a lot of records were destroyed and the lack of a register, the only possibility in finding each other is through DNA testing. By the start-up of a DNA-databank, and by voluntary subscribing to it, offspring and donors could be linked. We want to enable this possibility in Belgium.
- We want to participate in creating an independent institute/authority where needs of all stakeholders will be taken in account and which would be given the tools by our government to ensuring compliances with the new law as well as to be an effective regulator.
- We want to contribute in enabling better and specific professional support for DC, parents, recipients and donors.
- We want a systematic, confidential system for collection and investigation of reports of birth defects and about the long-term health of donors, donor conceived persons and their biological relatives.
- We want the assessment of the information reported and interpretation of the relevant risks for other biologically related individuals by knowledgeable healthcare professionals. But also the creation of an established structure to communicate health updates and risk information to individuals to whom it may be relevant.
- Complete traceability of gamete distribution records, or preferably, accurate documentation of birth records and periodically updated client contact information.
- We want to force our government in taking their responsibility in finally creating a national donor register. Not only do we want a national donor register, we want to extend it with a DC offspring register.
- We want to contribute in achieving a better regulation on a national, European and worldwide level.
- We are not against fertility treatments with donor gametes but are convinced there is a necessity for a better and mutual regulation, control and guidance of parents, donors and DC offspring.
Achievements
- Organizing DC offspring gatherings (10th so far)
- Prominent presence in the media: TV, radio, and written press
- 5 official questions asked in National Parliament
- 1 official inquest started regarding fertility treatments with donor gametes
- 2 official questions asked in European Commission regarding the NF1-case
- Contributed to two Belgian law drafts
- Received public and official support of the worldly renowned genetic professor Jean-Jacques Cassiman and our Children’s Rights Commissioner
Contact:
Due to the bilingualism of our country we created a website and Facebook page in both of our languages. If you have any questions, please don’t hesitate to contact us.
Stephanie Raeymaekers, chairman, email donorkinderen@gmail.com
www.donorkinderen.com
Facebook Donorkinderen België
www.donorkinderen.wordpress.com
twitter @donorkinderen
Christine Sterno, vice-president, email csterno@hotmail.com www.enfantsdedonneurs.com www.facebook.com/enfantsdedonneurs