Advocating for Patient Rights at the European Commission’s SoHO Conference
Today, June 24, 2024, our Chair, Klaudija Kordic, represented Fertility Europe at the European Commission’s Conference on the new regulations for SoHO (Substances of Human Origin) in Brussels where she delivered an impactful presentation. This significant event focused on the upcoming regulatory changes that will greatly influence patients, especially those dealing with infertility.
Key messages
Klaudija’s presentation emphasised core parts of the Regulation aimed at enhancing the safety, transparency, and ethical standards in the donation and use of human substances:
– Ensuring Safety for All Involved: A top priority of the SoHo regulation is the safety of recipients, donors, and offspring from medically assisted reproduction treatments. FE stress the importance of rigorous safety protocols to protect everyone involved in the SoHO processes.
– Transparency and Rights: FE appreciates maintaining high levels of transparency and adhering to the rights and principles outlined in the Charter of Fundamental Rights of the European Union. This includes the right to privacy and non-discrimination.
– Voluntary Donation Free of Coercion: FE underscores the necessity for all donations to be voluntary, free from any form of coercion or exploitation. Ensuring that donors give their consent without any undue pressure is fundamental to ethical SoHO practices.
– Informed Consent: Providing donors and recipients with comprehensive information to make informed decisions is essential. FE always highlight the need for clear, honest communication to uphold this principle.
– Prohibition of Commercial Promotion and Misleading Information: To maintain the integrity of SoHO activities, we support strict prohibitions against commercial promotion and the dissemination of misleading information.
– Equitable Access: FE calls for policies that guarantee equitable access to SoHO treatments and services, ensuring that all patients, regardless of their background, can benefit from these medical advancements.
The necessity for further changes
Despite these comprehensive regulations, Klaudija pointed out a significant omission: the new rules do not address the issue of anonymity in donation. This oversight neglects the rights of donor-conceived individuals to access information about their genetical origins. Fertility Europe has been advocating for the recognition of these rights, emphasising the importance of allowing individuals to understand their genetic heritage.
Fertility Europe’s Chair participation in this conference is a testament to our commitment to representing patient perspectives at the highest levels. Our advocacy for safety, transparency, and ethical practices in SoHO regulations reflects our dedication to improving healthcare standards and protecting patient rights.
We are incredibly proud of Klaudija’s contributions and the positive impact her insights will have on shaping future regulations.