Repronews #53: South Africa’s new guidelines allow heritable gene editing

MEPs support fertility care; China central gov’t fertility measures; steady fall in Nigerian fertility; “skinny genes” identified; resurrecting the Tasmanian tiger

Welcome to the latest issue of Repronews! Highlights from this week’s edition:

• Repro/genetics

  • CRISPR babies: South Africa’s new research guidelines allow heritable human gene editing to prevent diseases, under strict oversight

  • Members of European Parliament support fertility care and fighting involuntary childlessness

• Population Policies & Trends

  • “Birth-friendly society”: China’s central government unveils raft of measures to boost fertility, including enhancing flexible working hours and coverage of assisted reproductive technology

  • Nigeria fertility rate has fallen over 1% a year since 2021, from 5.2 per woman in 2021 to 5 in 2024

• Genetic Studies

  • University of Exeter finds “skinny genes” strongly associated with losing weight through exercise

• Further Learning

  • Colossal Biosciences says it is very close to completing Tasmanian tiger genome

Repro/genetics

“South Africa amended its research guidelines to allow for heritable genome editing” (The Conversation)

• Changes in South Africa’s Ethics in Health Research Guidelines may make the country one of the first to explicitly permit the use of genome editing to create genetically modified children.

• South African ethicists appear to be open to gene editing to prevent disorders like sickle-cell disease. New somatic (non-heritable) gene editing treatments for sickle-cell disease exist but are extraordinarily costly ($2.2-3.1 million per person). Germline gene editing directly of the embryo would prevent development and transmission of sickle-cell altogether.

• The guidelines state:

  • “Research on heritable human genome editing (HHGE) holds significant potential for addressing genetic diseases and improving human health.” They add however that such gene editing “also presents ethical challenges that require careful consideration and deliberation,” and that “responsible and cautious practices” are called for.

  • “HHGE research must have a clear and compelling scientific and medical rationale, focusing on the prevention of serious genetic disorders and immunity against serious diseases. The potential benefits to individuals and society should outweigh the risks and uncertainties associated with HHGE.”

  • “Informed consent must be obtained from all parties involved, including prospective parents and individuals whose genetic material is used in the research.”

  • “Ethical oversight should especially be illuminated by the right to freedom of scientific research, the right to access to healthcare, the best interests of prospective children, and the dignity of all individuals involved.”

  • HHGE projects should respect existing laws, be subject to continuous ethical evaluation, and prioritize safety. Gene-edited individuals should be subject to monitoring to understand long-term health effects.

• South African legislation appears to currently only ban human cloning but not human genetic modification as such.

• Therapeutic germline gene editing appears to also be legal in Belgium.

Source: Fertility Europe

MEPs to support tackling involuntarily childlessness (Fertility Europe)

• Members of the European Parliament (MEPs) came out in support of tackling infertility and involuntary childlessness at the launch event of the Coalition for Fertility.

• Klaudija Kordic, Chair of Fertility Europe’s Executive Committee, said: “It is time for bold policies that recognize infertility as a medical issue, and acknowledge the experiences of those who are involuntarily childless, whether due to medical conditions like cancer, endometriosis, pcos, male infertility, or social barriers like that unfairly affecting LGBTI individuals, people with disabilities, and other marginalized groups. This isn’t just about medical treatment, it’s about human dignity.”

• Several MEPs spoke out in favor of fertility care:

  • MEP Eleonora Meleti (center-right EPP, Greece): “Fertility care, to be recognized as an integral part of the European Health agenda, and supporting the mental health of those facing infertility, should be seen as fundamental right and not as an optional service.”

  • MEP Maria Noichl (center-left S&D, Germany): “I think for the future, we have to understand that gender mainstreaming means we have to think in every committee about gender equality. I think fertility mainstreaming means we have to, in every committee, think about the fertility of all people, young, old, men, girls, and so on.”

  • MEP Marko Vešligaj (S&D, Croatia): “I think that a coalition of progressive stakeholders, such as this one, is now more important than ever when we see the rise of the anti-democratic anti-gender forces.”

  • MEP Kira-Marie Peter Hansen (Greens/EFA, Denmark): “[Infertility] is not only a question of health policy. It’s a question of employment. It’s a question of the care economy. It’s a question of the economic possibilities within this Union, and globally to have access to actually also put children into the world if we wish to do that.”

• Birgit Van Hout, Director of the United Nations Population Fund (UNFPA), also expressed support: “The area of reproductive rights is one of the human rights areas that has known the fastest growth. You are … a frontier area of human rights.”

• One in six people of reproductive age in the European Union are affected by involuntary childlessness.

• The Coalition for Fertility aims to expand equal access to fertility treatments, comprehensive sex education in schools, and address discrimination and socio-economic pressures undermining fertility.