Repronews #34: Should insurance cover genetic testing of prospective parents?

Fertility in soutern Europe; China’s 3-Child Policy; Phenome India project; tool to estimate genes’ impact

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

• Repro/genetics

  • Ghent University Hospital calls for free genetic testing of prospective parents

  • Japanese researchers raise technical and ethical challenges to polygenic embryo selection

• Population Policies & Trends

  • Report on “demographic rearmament” in southern Europe

  • Institute for Family studies launches Pronatalism Initiative

  • China’s Three-Child Policy: Neo-Confucianism, ads, and pervasive state intervention to boost family formation

• Genetic Studies

  • Phenome India project secures 10,000 samples to boost precision medicine

  • GSA-MiXeR: a new tool to estimate individual genes’ impact

• Further Learning

  • Survey finds people with better relationships and more children tend to find life more meaningful

Repro/genetics

“Ghent University Hospital requests reimbursement for genetic tests for couples who want to have children” (Le Spécialiste)

• Ghent University Hospital in Belgium is asking the government to reimburse genetic testing for couples who want to have a child.

• Too often, parents concerned about the health of their future child forego genetic risk screening because it is too expensive. However, such a test can clarify the likelihood of hereditary diseases before pregnancy.

• “Approximately 3% of couples run the risk, with a probability of one in four, of having a child with a serious hereditary disease,” according the hospital’s clinicians. “Examples of these include cystic fibrosis, SMA [spinal muscular atrophy], metabolic diseases, etc.”

• The screening costs 1,500 euros per couple and is not reimbursed by the national health insurance. The cost may particularly be a deterrent for less educated couples.

• “Couples who want to benefit from it must have this opportunity, regardless of their financial capacity,” argues medical geneticist Sandra Janssens.

• About 68% of parents who do not choose screening indicated that cost played an important role in their decision.

• “We are campaigning for reimbursement of the test so that everyone has equal access to it,” says molecular geneticist Paul Coucke.

• Couples who refuse screening also cite as motives information overload or that the result would make no difference. However, general genetic carrier screening could prevent serious illness in 500 children every year in Flanders alone.

• Embryo selection can enable parents predisposed to passing on a genetic disease to have children free of the condition.

Technical and ethical challenges in polygenic embryo selection (medRxiv)

• Japanese researchers argue that the efficacy of pre-implantation genetic testing for polygenic risk score (PGT-P) is currently “questionable” due to technical challenges and also raise ethical concerns.

• In Japan, the target diseases of the established PGTs are limited. Only parents approved by specialists’ review are able to receive PGTs after repeated genetic counseling.

• The authors call for a society-wide discussion of the technology.

More on repro/genetics:

• “New Italian guidelines allow single women to transfer embryos… but only following a heterosexual relationship” (PET)

Population Policies & Trends

Is There Hope for Low Fertility? “Demographic Rearmament” in Southern Europe (IFS)

• The Institute for Family Studies (IFS) has published a report by Lyman Stone and Erin Wingerter on demographic trends and pronatal policies in southern Europe, with particular attention to relatively successful policies in France.

• Plummeting fertility rates in southern Europe have led governments across the region to consider pronatal policies.

• Italian Prime Minister Meloni recently spoke alongside Pope Francis about the importance of boosting Italian fertility, Spain’s fertility rate is at record lows, and Malta’s Parliament has called low birth rates an “existential challenge.”

• The report assesses where fertility in southern Europe is headed, what factors are driving its decline, and whether anything can be done.

• The authors find reasons for hope: pronatalism has worked where it has been seriously undertaken and sources of demographic underperformance are readily identifiable.

• The report does not provide one-size-fits-all policy recommendations for boosting fertility, arguing that these must be tailored to different countries’ circumstances.

• Fertility rates within marriage remain fairly high in much of southern Europe. Only Spain has seen a major decline in married fertility in the last 40 years. However, marriage rates have fallen sharply in all countries. 

• Fertility differences around Europe are not primarily due to differences in prevalence or sources of immigration, but rather to differences among native-born women in each country. 

• Desired family size is relatively low in southern Europe, perhaps due to adverse economic conditions leading young people to reduce their family ambitions.

• France’s pronatal policies undertaken between 1920 and 1950, and expanded in subsequent decades, have caused French fertility to remain durably elevated (0.1 to 0.3 more children per woman). This has led to France’s population being several million people higher today than it otherwise would have been.

• The authors argue governments should pursue a harmonized multinational data collection effort focused on assessing factors shaping fertility and marriage, similar to the country-specific surveys in Spain and Portugal in the late 2010s.

“Institute for Family Studies Launches the Pronatalism Initiative Under New Senior Fellow Lyman Stone” (IFS)

• Demographer Lyman Stone has been awarded an IFS senior fellowship to establish the Pronatalism Initiative.

• The IFS Pronatalism Initiative will pioneer new research to create a suite of policies to counteract global fertility decline.

• Stone, chief information officer of the consulting firm Demographic Intelligence, joins the team at IFS where he was previously a research fellow.

• “I am delighted to be joining the Institute for Family Studies as a senior fellow,” Stone said. “The IFS is respected by policy makers and the media for its high caliber research. The IFS Pronatalism Initiative will lead the broad and urgent interest in fertility to a clear, well-researched suite of policy solutions. Fertility rebound is not only possible, it may even be likely.”

• The IFS Pronatalism Initiative has been seed-funded with a $50,000 award from Emergent Ventures.

• “We are thrilled to receive this award from Emergent Ventures. The fertility crisis in the United States and around the world demands rigorous research identifying drivers and solutions of the collapse in fertility rates,” said IFS Executive Director Michael Toscano. “The IFS Pronatalism Initiative will build a team around Stone’s research to show countries, willing to make a concerted effort, how to address their fertility problems.”

• The IFS Pronatalism Initiative is anticipated to produce a major report a year which will be made available to policy makers and journalists. 

“Biopolitics of the three-child policy” (Made in China)

• An analysis of comments on Weibo, a major Chinese social media, suggests that the announcement in the mid-2010s of the Two-Child Policy was met with excitement and hope. The Three-Child Policy however suggested the government not interested in empowering citizens’ reproductive choices as such.

• Surveys suggest there is little interest in large families among young Chinese. Educated young people in the cities value personal growth, self-realisation, and freedom to enjoy life. They want to stabilise their careers before starting a family and see marriage and childbearing as personal affairs, not matters of state.

• The author argues that the Three-Child Policy is part of a broader project to engineer a new, stable, and harmonious family-centric society and family-friendly economy that will smooth out demographic irregularities in two main ways: by re-traditionalizing family culture and by reconcentrating power over reproduction in the Chinese Community Party (CCP) and Party-led institutions.

  

  “They will have a brother or sister,” by China Youth Daily.

• Chinese leader Xi Jinping has argued that the nation’s ancient Confucian ideals have made China great in the past and they lived on in the CCP’s plans for national revitalisation. With the Three-Child Policy, the country encourages the formation of large neo-Confucian families to support the young and the old.

• Three-child families became promoted through a broad campaign of ideological education and a set of sweeping socioeconomic incentives and disincentives labelled “supporting measures.”

• The author argues China’s new population project is grounded in Xi Jinping’s vision for the restoration of a neo-traditional family order rooted in the Confucian fundamentals of hierarchy, respect for the old, women’s responsibility for domestic roles, and harmony among the generations. Such a development would turn China’s increasingly individualistic society into a more familistic one.

• The 2021 Central Committee and State Council Decision announcing the Three-Child Policy set out the core cultural themes to be advanced countrywide:

  Promote the traditional virtues of the Chinese nation; respect the social value of childbirth; advocate marriage and childbirth at an appropriate age and better childbearing and rearing; encourage couples to share child-rearing responsibilities; break with outdated customs such as exorbitant betrothal gifts; and foster a new culture of marriage and childbearing.

• Wang Pei’an, Executive Vice-President of the Party-led Birth Planning Association (BPA), said: “This is a systematic and comprehensive interpretation of the marriage and childbearing culture in the new era.”

• The Chinese government is attempting to build a comprehensive social infrastructure comprising a family-centric society and a family-friendly economy and social service sector to raise the birthrate. The 2021 decision mentions the following “systems”:

  1. A population service system that covers not just reproduction, as under the One-Child Policy, but the entire life cycle.

  2. A fertility support system that uses government finance, tax collection, insurance, education, employment, and housing measures to stimulate childbearing and ensure the quality of services for childbearing and rearing.

  3. A birth-friendly working environment that offers mothers flexible work schedules, generous maternity leave, improved maternity insurance systems, and re-employment training after childbirth; and safeguards women’s legal rights and interests in employment.

  4. An inclusive childcare service system that vastly increases the quantity and quality of childcare services.

  5. A population monitoring system that covers the entire population over the whole life cycle, integrating information on education, public security, civil affairs, health, medical insurance, and social security.

• How much of this is accomplished will depend on political and economic matters (e.g., how much pressure the center exerts, how much funding is allocated).

• With the construction of this comprehensive social infrastructure, the scope for state surveillance of and intervention in family life has vastly increased.

• Like the One-Child Policy in 1980, the Three-Child Policy today is being rolled out in stages, starting with target populations most likely to comply. In September 2023, Xi Jinping, as Chairman of the Central Military Commission, signed an executive order charging the armed forces with taking the lead in carrying out the amended population law. The measures included 33 provisions that urge military couples to do their patriotic duty by marrying and having children “at the right ages” and considering having three.

• For the general public, media reports reveal piecemeal introduction of supportive measures in various localities. Among the more common inducements are matchmaking events, cash awards for those marrying “at the right age,” group weddings to curb “exorbitant bride prices,” childbirth allowances, childrearing subsidies, paternity leave, and income tax deductions for expenses related to caring for children under three.

• Some localities have pushed enforcement in the direction of more forceful birth planning. Tactics include refusing young men’s requests for vasectomies, forbidding illegal (such as gender-selective) abortions, and maintaining a 30-day pre-divorce waiting period that strongly discourages marital breakups.Rapid growth of such measures can be expected over the next few years.

• The author sugggets that many surveys show that the Chinese overwhelmingly support their government. In the most recent World Values Survey (conducted before the COVID-19 pandemic), 94.6% of Chinese questioned said they had significant confidence in their government.

“Falling birthrates: can Western nations reverse the decline?” (Miriam Cates MP on LBC)

More on population policies and trends:

• “Tokyo government to launch dating app to boost birthrate” (Japan Today)

• “Pro-parent policies can raise birth rates” (The Critic)

• “More child care freedom, higher fertility?” (IFS)

• “The fertile formula A modest proposal to sharply raise fertility” (Bryan Caplan)

• “Two relatively cheap ways to make raising children more affordable: Invest in Medicare for Kids and Universal Free School Lunch” (Gary Winslett/Medium)

• “Miyazaki might be right: Cases of a town, a city, a province & a country that boosted birth rates” (population.fyi)

• Study found higher parental insurance and leave boosted birthrates in Quebec (population.fyi)

Genetic Studies

Phenome India project hits target with 10k samples; aims for new era in precision medicine (HealthWorld)

• India’s Council of Scientific and Industrial Research (CSIR) has completd the first phase of the “Phenome India-CSIR Health Cohor Knowledgebase” (PI-CheCK) project. Launched on 7th December 2023, the PI-CHeCK aims to assess risk factors in cardio-metabolic diseases among Indians.

• 10,000 samples have been secured to develop an enhanced prediction model for cardio-metabolic diseases, especially diabetes, liver diseases, and cardiac diseases.

• Indians have a high burden of cardio-metabolic diseases, but the reasons are not entirely clear. “The risk factors in the West may not be the same as the risk factors in India,” said Dr. Shantanu Sengupta of the CSIR-Institute of Genomics and Integrative Biology.

• Currently, most risk prediction algorithms are based on epidemiological data from white populations. These may be not very accurate for the Indian population due to ethnic diversity, varied genetic make-up and lifestyle patterns including dietary habits.

• By generating a comprehensive phenome database tailored to the Indian population, the project aims to catalyze similar initiatives across the country, thereby ensuring that risk prediction algorithms are more accurate and representative of India’s diverse genetic and lifestyle landscape.

Improved functional mapping of complex trait heritability with GSA-MiXeR implicates biologically specific gene sets (Nature Genetics)

• While genome-wide association studies (GWAS) are increasingly successful in discovering genomic loci associated with complex human traits and disorders, the biological interpretation of these findings remains challenging.

• The GSA-MiXeR analytical tool for gene set analysis (GSA) estimates the impact of individual and groups of genes.

• “GWAS, which are often produced by large international consortia, analyze the genomes of many individuals to find genetic variations associated with specific diseases,” said Oleksandr Frei, Researcher at the Center for Precision Psychiatry at University of Oslo. “Our tool, called GSA-MiXeR, is designed to analyze the genetic data collected from these large-scale studies, aiming to identify how groups of genes contribute to the risk of developing a disease.”

• Such biologically relevant gene sets, often with fewer than ten genes, are more likely to provide insights into the pathobiology of complex diseases and highlight potential drug targets.

More on genetic studies:

• “Testing quantitative and qualitative sex effects in a national Swedish twin-sibling study of PTSD” (American Journal of Psychiatry)

Further Learning

“People with better relationships and more children tend to find life more meaningful” (PsyPost)

• A survey conducted during the COVID-19 pandemic found that individuals with more children and better relationship quality tended to perceive life as more meaningful. The strength of the association between life meaning and relationship quality was stronger in men.

• The research was published in Frontiers in Psychology.

• Meaning in life refers to “the extent to which people comprehend, make sense or see significance in their lives, accompanied by the degree to which they perceive themselves to have a purpose, mission, or overarching aim in life.”

• Individuals reporting greater meaning in life also tended to be more religious and feel more socially connected.

More on human nature, evolution, and biotech:

• Biotech policy

  • Dr. Jason Kelly, Chairman of the U.S. National Security Commission on Emerging Biotechnology: “Teaming up to build our bio future” (BIO)

  • “U.S. officials describe national security partnership with biotech” (BIO)

  • “Let’s make sure the next biotech revolution is an American one” (Telegraph Herald)

  • Étienne Decroly, “There is an urgent need to harmonize international biosafety regulations in research” (Le Monde)

• Health

  • “Mummies over 4,000 years old had atherosclerotic heart disease” (Forbes)

  • “Sunscreen advice should factor in ethnicity and skin colour” (Guardian)

  • “Getting fit is great—but it could turn you into a rightwing jerk” (Guardian)

• Agrifood

  • “Edible mold as meat alternative? Scientists create fungal food, look to boost nutrition, ‘mouth feel’” (MSN)

  • “Genetically engineered animals to be regulated by FDA” (CSPI)

  • China’s Genetically Modified Dilemma (Asia Society)

Disclaimer: The Genetic Choice Project cannot fact-check the linked-to stories and studies, nor do the views expressed necessarily reflect our own.