Repronews #22: The expanding frontiers of IVF in the U.S.
Repronews #22: The expanding frontiers of IVF in the U.S.
DNA tests reveal incest; fertility clinics market forecast; German scientists on embryo research; ethics of polygenic PGT; Japan's growing family friendly municipal movement; Soviet eugenics
Welcome to the latest issue of Repronews! Highlights from this week’s edition:
Repro/genetics
Washington Post on IVF practices in the U.S.
The Atlantic on how DNA tests are revealing the prevalence of incest
Global fertility clinics market forecast to crow 11.2% per year to $93 billion by 2032
German scientists’ push to liberalize embryo research, including for gene editing
PET on the ethics of preimplantation of genetic testing using polygenic scores
Population Policies & Trends
Amakusa and other Japanese cities are part of growing local movement to support childcare and family formation
Genetic Studies
Whole-genome sequencing is identifying rare genetic variants associated rheumatoid arthritis, opening up possibilities for treatment
Being female provides protection against genes predisposing to autism
Further Learning
On the history of eugenics in the Soviet Union
Repro/genetics
“Alabama IVF ruling draws attention to technology’s unregulated frontiers” (Washington Post)
Polls show Americans widely support IVF and other interventions to help people expand their families. But unlike some other countries, the United States hasn’t regulated screening an embryo’s sex or other traits, like intelligence and height. This leaves patients and doctors to decide.
Both Democrats and Republicans have had reasons to avoid delving too deeply into regulating IVF. Prohibiting embryos from being destroyed, for instance, creates obstacles for people trying to conceive by IVF. “It’s fairly unpopular to try to restrict people from having families,” said Glenn Cohen, an ethicist and professor at Harvard Law School.
Cohen said many people view picking an embryo on the basis of sex as wrong but struggle to explain why. “If you think it’s wrong because of harming embryos that don’t get implanted, that seems to imply that embryos have rights,” he said.
Screening embryos for sex is common in Saudi Arabia and Lebanon, while it is restricted in Chile and Australia, and banned in China and India. The practice is legal and increasingly popular in the United States, which has become a destination for people looking to conceive by IVF. Foreign nationals use genetic screening before implantation at higher rates than U.S. residents.
Jeffrey Steinberg, a doctor who runs the Fertility Institutes, offers embryo screening for sex and eye color at his clinics in Los Angeles and New York. He said that at least 60% of his patients in the United States come from abroad.
Steinberg said he is comfortable with the lack of regulation on what procedures can be offered. “The best policy is to keep [politicians’] noses out of people’s reproductive lives.”
Some companies offer DNA tests that scan an embryo for genetic variations, making predictions about future outcomes that can extend beyond purely medical considerations.
Genomic Prediction for a time offered tests that screened for intellectual disability and abnormally short stature, according to a cached version of its website. The New Jersey-based firm currently offers a test to predict conditions like cancer and schizophrenia.
“This test [means] a patient can choose an embryo with a lower overall risk compared to another embryo,” Genomic Prediction said.
MyOme, a DNA testing firm, once explored projecting an embryo’s future educational attainment and household income, according to a 2021 paper in the New England Journal of Medicine. The company said at the time that it didn’t predict “nondisease traits,” finding that “these issues distract from our health-focused conversation and mission.”
A MyOme spokesperson said it is developing a test that predicts conditions like breast cancer and coronary artery disease, but it is not commercially available. The company said risk scores from such an exam “will transform health care.”
Screening for polygenic conditions “remains inaccurate and unreliable,” the American Society for Reproductive Medicine (ASRM) wrote last year.
Sean Tipton, ASRM’s chief advocacy and policy officer, said the group’s mission is education, not regulation: “We are perfectly happy for people to wrestle with those decisions.”
Companies in assisted reproductive technology have raised more than $2 billion since 2017, according to data provider PitchBook.
Kindbody, a network of fertility clinics recently valued at $1.8 billion, said the Alabama ruling “threatens to undermine the rights of patients and the medical ethics that are fundamental to our profession” and “must not set new precedent.”
“DNA tests are uncovering the true prevalence of incest” (The Atlantic)
In 1975, a psychiatric textbook put the frequency of incest at one in a million.
This number is almost certainly a dramatic underestimate. The stigma around openly discussing incest, which often involves child sexual abuse, has made the subject difficult to study.
In the 1980s, feminist scholars argued, based on the testimonies of victims, that incest was far more common than recognized. Widespread genetic testing is now uncovering case after secret case of children born to close biological relatives.
The geneticist Jim Wilson at the University of Edinburgh was shocked by the frequency of incest he found in the UK Biobank, an anonymized database. One in 7000 people, according to his unpublished analysis, was born to parents who were first-degree relatives—a brother and a sister or a parent and a child
This reflects only the cases that resulted in pregnancy, that did not end in miscarriage or abortion, and that led to the birth of a child who grew into an adult.
Most of the people affected may never know about their parentage, but many are now stumbling into the truth after AncestryDNA and 23andMe tests.
Across human cultures, incest between close family members is one of the most universal and deeply held taboos. A common explanation is biological: children born from related parents are more likely to develop health complications they are more likely to be carriers of the same recessive mutations.
From the 1960s to the ’80s, a handful of studies following a few dozen children born of incest documented high rates of infant mortality and congenital conditions. The odds of incest leading to a genetic disease are much higher, though not guaranteed.
Global fertility clinics market forecast to grow 11.2% per year $93 billion by 2032 (PharmiWeb)
Marketresearch.biz forecasts that the global market for fertility clinics is expected to expand from $33 billion in 2022 to $93 billion by 2032, with compound annual growth of 11.2%.
Drivers of growth include rising incidence of infertility, advances in assisted reproductive technologies, social trends such as delayed childbearing and acceptance of non-traditional families, expanding insurance coverage, and supportive regulatory environments.
Obstacles to growth include financial barriers to high-cost treatments, emotional and psychological stress related to uncertain outcomes, and ethical and legal considerations, such as debates over surrogacy and embryos’ status.
German scientists push to liberalize embryo research (Gen-Ethische Informationsdienst)
Scientists are pushing to reform the German Embryo Protection Act (ESchG) to enable access to embryos for research.
Germany restricts not only controversial reproductive technologies such as surrogacy, but also research on human embryos. The ESchG became effective in 1991 as a criminal law passed on the grounds of “pro-life” arguments.
The legislators referred to the German constitution’s provisions that: “Everyone has the right to life and physical integrity.” The law considers that human life must “not be made an object for the benefit of others” and this must “also apply to human life at the stage of its earliest embryonic development.”
Many German scientists disagree with the ESchG’s moral-theological justification and unequal treatment of embryos. After all, abortion within 12 weeks can—unlike embryo research—be carried out by those involved under certain circumstances with impunity.
Researchers have also pointed out for more than three decades that embryos produced by IVF in Germany are regularly discarded if they are not used.
German lawmakers adopted the Stem Cell Act in 2002, allowing the importation for research of embryonic stem cells produced abroad before a certain date in the past (currently 1 May 2007). This may only happen if a research question can only be resolved using embryonic cells and if it serves “high-ranking research objectives.” This is decided on the basis of an individual assessment by the Central Ethics Committee for Stem Cell Research set up for this purpose.
In October last year, the Federal Ministry of Education and Research (BMBF), currently led by the Free Democratic Party (FDP), held a conference entitled Human embryos in medical research: Taboo? Justifiable? Opportunity?. Minister of Education and Research Bettina Stark-Watzinger’s argued for stem cell research to develop treatments: “We should seize opportunities that we can seize.”
The event gathered speakers supportive of embryo research, including from the German Academy of Sciences Leopoldina. Leopoldina has long advocated for legalizing embryo research as it would “help to better identify and treat infertility, improve the survival and healthy development of embryos and fetuses during pregnancy, and prevent miscarriages and premature births.”
Physician and Leopoldina member Claudia Wiesemann cited the development of elective single embryo transfer (eSET) as a successful reprotech innovation. With this method, a larger number of egg cells are fertilized and the embryo with the highest chance of development is transferred. This method is currently prohibited in Germany.
In 2017, Leopoldina published a discussion paper favoring a a general acceptance of “germline therapy” once the intervention is deemed to be safe. Determining this would notably require research on embryos.
Subsequently, the Leopoldina advocated the legalization of embryo research for “high-ranking research objectives” in a 2021 statement. The authors argued for “critically reviewing and evaluating the opportunities and risks of this form of gene therapy,” referring to heritable genome editing.
At the BMBF conference, the Chair of the German Ethics Council, Alena Buyx, said research on embryos is needed to develop germline interventions to prevent monogenic diseases.
“The ethics of preimplantation genetic testing using polygenic scores” (PET)
The Progress Educational Trust (PET), a British association working on fertility and genetic conditions, summarizes the state of play on preimplantation genetic testing (PGT) using polygenic scores.
The increasing accessibility of genomic data and a general interest in wanting to learn more about our genetic makeup has led to growing commercial offer of PGT.
PGT is highly regulated in the UK by the Human Fertilisation and Embryology Authority (HFEA). It is permissible where there is a particular risk of transmission of a serious monogenic disorder (PGT-M) or structural chromosomal rearrangement (PGT-SR), and where there is knowledge of the specific causative genetic variant(s).
PGT is available to National Health Service (NHS) patients who have a family history of genetic illness and satisfy other eligibility criteria. Some people may opt to fund this treatment privately.
Some private sector companies are now also offering PGT. This may include testing embryos for genetic markers in the absence of a family history of genetic illness, with the intention of predicting an embryo’s future traits, conditions and health risks. These can screen embryos not recessive genes, polygenic scores, and novel (not seen in the family before) or rare genetic variants.
Polygenic scores estimate the probability of having healthy or other phenotypic traits. These are often based on data from people who are mostly of high socioeconomic status, good health, and/or European ancestry, posing challenges to their transferability to other populations. Researchers are working to address these challenges.
Polygenic testing has not yet been shown to increase the chances of a successful pregnancy and such tests are not funded by the NHS.
More on repro/genetics:
“The radical conservative case for genetic enhancement” (GLP/Jonathan Anomaly)
“Meet the fetal surgeon forging CRISPR’s next frontier: curing diseases in the womb” (STAT)
“Two arrests in Israel after IVF baby with haemophilia born” (BioNews)
“Michigan to decriminalise commercial surrogacy and protect IVF (BioNews)
UK to increase compensation for sperm and egg donors (BioNews)
“Maltese pro-life doctors warn MEP Engerer of ‘eugenics-like’ abortion of Down syndrome fetuses” (Lovin Malta)
“Exploitation, eugenics, and severe side effects: The tragedy of IVF” (Angelus News)
Non-invasive preimplantation genetic testing for aneuploidy introduced to Nigeria (Vanguard)
Population Policies & Trends
“Amakusa joins growing local family policy movement in Japan (population.news)
Japanese cities like Nagareyama, Nagi, and others have been adopting and expanding family policies. The southern city of Amakusa has joined this trend.
Amakusa will now provide free childcare services and childcare subsidies.
Amakusa is also providing child bonuses linked to education milestones such as school entries and graduations. The program distributes ¥50,000 ($330) for school commencement and middle school graduation, and ¥100,000 ($660) for high school graduation.
More on population policies and trends:
“Falling fertility rates leave India staring at a looming demographic challenge” (Economic Times, India)
Genetic Studies
“Low-frequency and rare genetic variants associated with rheumatoid arthritis risk” (Nature)
Rheumatoid arthritis is a autoimmune disease typically affecting the joints. Heritability of nearly 50% is estimated.
Low-frequency and rare genetic variants can have a large role in heritability. Discovery of rare variants has informed the development of drugs for treatment.
The authors conclude there are exciting opportunities on the horizon for genetics in rheumatoid arthritis, including larger datasets and consortia, whole-genome sequencing and direct applications of findings for management and treatment.
“The female protective effect against autism spectrum disorder” (Cell Genomics, 08/06/2022)
Autism spectrum disorder is diagnosed three to four times more frequently in males than in females.
Using both epidemiologic and genetic approaches, the study strongly supports a female protective effective against autism’ common inherited influences.
More on genetic studies:
Study finds Beethoven had few known genes associated with beat synchronization (New Atlas)
Further Learning
“How the USSR wanted to create real ‘supermen’” (Russia Beyond)
The article retraces the history of eugenics in the Soviet Union.
Soviet biologist and geneticist Nikolai Koltsov wrote in 1923: “The breed of every kind of animal and plant, including man, can be changed consciously by selecting such breeders who will give the most desirable combination of traits in the offspring.”
Eugenicists urged talented people to pair among themselves to increase the chances of producing outstanding children, thus leading to “brain evolution” and “enrichment of the nation with noble genes.”
Herman Meller, a U.S. geneticist and corresponding member of the Soviet Academy of Sciences, wrote Stalin in 1936: “Many mothers of tomorrow, freed from the shackles of religious prejudice, will be proud to mix their plasma with that of Lenin or Darwin and give society a child inheriting their biological qualities.”
In this way, a “superhuman” would emerge, a “Homo creator,” who, according to Koltsov, “must truly become the king of nature and subjugate it to himself by the power of his mind and his will.”
Koltsov opposed forced selection, writing: “Modern man will not give up the most precious freedom—the right to choose a spouse of his own choice.”
The scientist believed the State should solve “eugenic problems” by creating more comfortable conditions of existence for “the most valuable producers,” thus increasing their birth rate.
Medical scientist Sergei Davidenkov proposed mandatory psycho-eugenic examinations of the population to establish innate giftedness. Level of education, social status, and nationality were not supposed to influence the results of testing. People in the higher “genogroups” would obtain salary increases with the birth of each child.
Geneticist Alexander Serebrovsky advocated artificial insemination of women with “recommended sperm.” He argued: “Procreation can and should be separated from love by the mere fact that love is a completely private affair of lovers, while procreation is and, under socialism, even more so should be, a public affair.”
Serebrovsky wrote: “Socialism, by destroying private-capitalist relations in the economy, will also destroy the modern family and, in particular, will destroy the difference in men’s attitude towards children from their own or not their own sperm.”
Soviet eugenicists’ ambitious projects were never realized. Eugenics was criticized for disregarding genetic diversity and the Soviet leadership feared such breeding approaches would hurt its standing among peasants and workers. Eugenics declined in respectability in part due its popularity among the Nazis.
In the late 1930s, eugenics as a philosophical and ideological concept was banned in the Soviet Union. However, some of its developments found application in certain fields, notably the treatment of hereditary diseases.
More on human nature, biotech, and evolution:
“Adding genetic interests to utilitarianism” (Clear Language, Clear Mind)
“The sickness of life: On the problems of anti-natalism (Lit Hub)
“Compassionate biorealism: A vision for non-blank-slatist progressivism” (Parrhesia)
“World’s first genetically engineered pig kidney transplant into living patient is major step towards addressing global organ shortage” (GLP)
“Over a million seeds are stored behind locked doors on Svalbard: The Svalbard Global Seed Vault is the largest in the world” (Science Norway)
“Some U.S. states are now trying to ban lab-grown meat: Spurious ‘war on ranching’ cited as reason for legislation” (Ars Technica)
“The biopolitics of genocide of the Kurds in Saddam’s Iraq” (Tamil Guardian)
“How did humans learn to speak?: Scientists compared parts of the brain to correlate speech in humans and primates” (SciWorthy)
Disclaimer: The Genetic Choice Project cannot fact-check the linked-to stories and studies, nor do the views expressed necessarily reflect our own.