Coalition to Modify NOTA (the National Organ Transplant Act of 1984)

 Elaine Perlman forwards the following discussion points:

Coalition to Modify NOTA Talking Points

modifyNOTA.org

What is the Coalition to Modify NOTA proposing? The Coalition to Modify NOTA proposes providing a $50,000 refundable tax credit to remove all disincentives for American non-directed kidney donors who donate their kidney to a stranger at the top of the kidney waitlist in order to greatly increase the supply of living kidney transplants, the gold standard for patients with kidney failure.

What is the value of a new kidney? The value of a new kidney, in terms of quality of life and future earnings potential, is between $1.1 million and $1.5 million.

What is the American kidney crisis? Fourteen Americans on the waiting list for a kidney transplant die each day. That number does not include the many kidney failure patients who are not placed on the waiting list but would have benefited from a kidney transplant if we had no shortage. The total number of Americans with kidney failure will likely exceed one million by 2030. 

Why not rely on deceased donor kidneys to end the shortage? A living kidney transplant lasts on average twice as long as a deceased donor kidney. Fewer than 1 in 100 Americans die in a way that their kidneys can be procured. Currently, the 60% of Americans who are registered as deceased donors provide kidneys for 18,000 Americans annually. Even if 100% of Americans agreed to become organ donors, this would raise donations by only about 12,000 per year. In the USA, 93,000 Americans are on the kidney waitlist. A total of 25,000 people are transplanted annually, two-thirds from deceased donors and one-third from living donors. The size of the waitlist has nearly doubled in the past 20 years, while the number of living donors has not increased.

What is the extra value that non-directed kidney donors provide? Non-directed kidney donors often launch kidney chains that can result in a multitude of Americans receiving kidneys. Fewer than 5% of all living kidney donations are from non-directed kidney donors who are an excellent source of organs for transplantation because they are healthier than the general population. 

 

How much does the taxpayer currently spend on dialysis? Kidney transplantation not only saves lives; it also saves money for the taxpayer. The United States government spends nearly $50 billion dollars per year (1% of all $5 trillion collected in annual taxes) to pay for 550,000 Americans to have dialysis, a cost of approximately $100,000 per year per patient, a treatment that is far more expensive than transplantation.

 

How many more lives will be saved with the refundable tax credit for non-directed donors? The number of non-directed donors increased from 18 in 2000 to around 300 each year. After our Act becomes law, we estimate that we will add approximately 7,000 non-directed donor kidneys annually. That is around 70,000 new transplanted Americans by year ten. 

 

How much tax money will be saved once the Act is passed? The refundable tax credit will greatly increase the number of living donors who generously donate their kidneys to strangers. We estimate that in year ten after the Act is passed, the taxpayers will have saved $12 billion. 

 

What is a refundable tax credit? A refundable tax credit can be accessed by both those who do and those who do not pay federal taxes. 

 

What do Americans think about compensating living kidney donors? Most Americans favor compensation for living kidney donors  to increase donation rates. 

 

Who is able to donate their kidneys?  Donation requires potential organ donors to undergo a comprehensive physical and psychological evaluation, and each transplant center has its own rigorous criteria. Only around 5% of those who pursue evaluation actually end up donating, and only about one-third of Americans are healthy enough to be donors. Providing financial incentives will encourage more Americans to donate their kidneys to help those with kidney failure.

 Do kidney donors currently have expenses that result from their donation? The medical costs of donation are covered by the recipients' insurance, but donors are responsible for providing for the costs of their own travel, out-of-pocket expenses, and lost wages. Programs like the federal NLDAC and NKR's Donor Shield can help offset these costs, making donation less expensive.

Is it moral to compensate kidney donors? Compensation for kidney donors can be viewed as a way to address the current kidney shortage and save lives. Americans are compensated for various forms of donation such as sperm, eggs, plasma, and surrogacy, all of which involve giving life. 

How long do we need to compensate living kidney donors? Compensation should continue until a xenotransplant or advanced kidney replacement technology becomes available. In the meantime, it's crucial to prevent further loss of lives due to the shortage.

 Will incentivizing donors undermine altruism?  Financial compensation for donors can coexist with altruism. Donors can opt out of the funds from the tax credit or choose to donate those funds to charity. The majority of donors support financial compensation, and relying solely on altruism has led to preventable deaths.

 In addition to ending the kidney shortage, what are other benefits of the Act? The Act can help combat the black market for kidneys and reduce human trafficking because we will have an increased number of transplantable kidneys. It can also motivate individuals to become healthier to pass donor screening, potentially further reducing overall healthcare costs.

 Why provide non-directed donors with a refundable tax credit of $50,000? The compensation is designed to attract those who are both healthy and willing to donate. Given the commitment, time, and effort involved in the donation process, this compensation recognizes the value of those who save lives and taxpayer funds.

 When more donors step forward, can transplant centers increase the number of surgeries?  There is considerable unused capacity at most U.S. transplant centers, and increasing the number of donors is likely to lead to more surgeries. The goal is to perform more kidney transplants and reduce the waitlist, benefiting patients in need.

 In what way does the Act uphold The Declaration of Istanbul?  While the Act deviates from one principle of the Declaration of Istanbul by offering compensation, it aligns with the other principles and is expected to standardize compensation and reduce worldwide organ trafficking.

 What about dialysis as an alternative to transplant?  Dialysis, while a treatment option, can be a challenging and uncomfortable process for patients. For those who could have been transplanted if there were no kidney shortage, dialysis can result in needless suffering and an untimely death.

 Why not compensate living liver donors? Liver donation is riskier and not as cost-effective as kidney donation. While the Act currently focuses on kidney donors, it's possible that compensation for liver donors could be considered in the future.

 What about the argument that providing an incentive to donate will exploit the donors, especially low income donors? 

Primarily middle and low income kidney failure patients are dying due to the kidney shortage. People with lower incomes tend to have social networks with fewer healthy people because health is related to income level. In addition, being placed on a waitlist often costs money. Kidney donation also costs money, an estimated 10% of annual income. The refundable tax credit will help low income donors and recipients the most by making donation affordable and increasing the number of kidneys for those waiting the longest on the waitlist, frequently middle and low income Americans. The tax credit aims to help those most affected by the kidney shortage, as poorer and middle-income individuals often bear the brunt of the kidney crisis’s consequences. The Act will level the playing field, making it easier for those at all income levels to receive a life-saving kidney. 

Please examine this chart:

 

The EU considers tightening bans on compensating donors of Substances of Human Origin (SoHO)

 Peter Jaworski considers an  EU proposal this month to harmonize across the EU bans on paying donors for Substances of Human Origin (SoHO).  Presently Germany, Austria and Chechia allow payment to plasma donors.

The E.U. Doesn't Want People To Sell Their Plasma, and It Doesn't Care How Many Patients That Hurts. The United States currently supplies about 70 percent of the plasma used to manufacture therapies for the entire world.  by PETER JAWORSKI 

"The European Union looks like it might take the foolish step of banning financial incentives for a variety of substances of human origin, including blood, blood plasma, sperm, and breast milk. The legislation on the safety and quality of Substances of Human Origin includes an approved amendment that says donors can only be compensated for "quantifiable losses" and that such donations are to be "financially neutral." This legislation is supposed to harmonize the rules across the 27 member countries, promote safety, with the ban on financial incentives intended to avoid commodification and the exploitation of the poor. 

...

"Already the E.U. is dependent on plasma collected in the United States for around 40 percent of the needs of its 300,000 rare disease patients. They're not as dependent as Canada because Germany, Austria, Hungary, and the Czech Republic allow a flat-fee donor compensation model and so are able to have surplus collections that contribute 56 percent of the E.U. total. The remaining 23 countries, each of which runs a plasma collection deficit, manage just 44 percent. 

"So what is likely to happen if the new rules make this flat-fee donor compensation model illegal? Will safety improve and commodification and exploitation be avoided? No, the E.U. will just become even more dependent on the United States."

Gamete exchange

 Here's a cheerful story of peer to peer assisted reproduction, from the Washington Post:

Two couples couldn’t have babies, so they helped each other  By Kyle Melnick

"Neva and her wife, Kelsey, were considering using a surrogate or an in vitro method to have a child. John and his wife, Amy, couldn’t carry a pregnancy because of a hysterectomy Amy underwent to treat endometriosis.

“Just give us your sperm,” Neva recalled telling John. “We’ll have a baby, and then we’ll just give you an egg. It’s not a big deal.”

...

"In 2020, John donated sperm so that Kelsey could become pregnant through an insemination service. The Bentons’ baby was born the next year in Kansas. Kelsey, now 32, then acted as a surrogate for the Cardenases and birthed the Arizona couple’s child in July.

...

"the couples bought an insemination kit and wrote up a surrogacy contract with an attorney’s assistance. Kelsey tracked her menstrual cycles; John, who’s now 41, took pills and adjusted his diet to produce healthy sperm."

Compensating kidney donors: a call to action by Brooks and Cavanaugh in the LA Times

 Here's a clarion call for compensation of living kidney donors, from two nondirected kidney donors.  It's not the first, and very likely not the last, given the difficulty of modifying the existing law.  But it makes the case very clearly (and proposes that a tax credit spread over ten years might be the way to move foreward).

Opinion: A single reform that could save 100,000 lives immediately BY NED BROOKS AND ML CAVANAUGH, JULY 9, 2023 

"Never in the field of public legislation has so much been lost by so many to one law, as Churchill might’ve put it. The National Organ Transplant Act of 1984 created the framework for the organ transplant system in the United States, and nearly 40 years later, the law is responsible for millions of needless deaths and trillions of wasted dollars. The Transplant Act requires modification, immediately.

"We’ve got skin in this game. We both donated our kidneys to strangers. Ned donated to someone who turned out to be a young mother of two children in 2015, which started a chain that helped an additional two recipients. And Matt donated at Walter Reed in 2021, after which his kidney went to a Seattleite, kicking off a chain that helped seven more recipients, the last of whom was back at Walter Reed.

"Ned founded, and Matt now leads, an organization that represents nearly 1,000 living donors

...

"eight years ago, when Ned donated, the number of living kidney donors was 6,000. With all the work we’ve done since, the number of living donors is still about 6,000 annually. In the United States, nearly 786,000 people suffer from end-stage kidney disease, more people than can fit in the 10 largest NFL stadiums combined.

...

"More Americans die of kidney disease than of breast or prostate cancer, and one in three of us is at risk. This illness is widespread, but what makes it worse is the staggering financial burden borne by everyone. The head of the National Kidney Foundation testified in March that Medicare spends an estimated $136 billion, nearly 25% of its expenditures, on the care of people with a kidney disease. Of that, $50 billion is spent on people with end-stage kidney disease, on par with the entire U.S. Marine Corps budget.

...

"The National Organ Transplant Act prohibits compensating kidney donors, which is strange in that in American society, it’s common to pay for plasma, bone marrow, hair, sperm, eggs and even surrogate pregnancies. We already pay to create and sustain life

...

"The ethical concerns regarding compensation are straightforward. Nobody wants to coerce or compel those in desperate financial straits to do something they would not have done otherwise. The challenge, then — until artificial or nonhuman animal substitutes are viable options — is to devise a compensation model that doesn’t exploit donors.

"Compensation models have been proposed in the past. A National Institutes of Health study listed some of the possibilities, including direct payment, indirect payment, “in kind” payment (free health insurance, for example) or expanded reimbursements. After much review, we come down strongly in support of indirect payment, specifically, a $100,000 refundable federal tax credit. The tax credit would be uniformly applied over a period of 10 years, in the amount of $10,000 a year for those who qualify and then become donors.

"This kind of compensation is certainly not a quick-cash scheme that would incentivize an act of desperation. Nor does it commoditize human body parts. Going forward, kidney donation might become partly opportunistic rather than mostly altruistic, as it is now. But would it be exploitative? Not at all."

...

Ned Brooks and ML Cavanaugh are living kidney donors, and Brooks is the founder of the Coalition to Modify NOTA.

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Here are all my posts that mention Ned Brooks, starting with this one:

Friday, February 26, 2016

A Freakonomics listener was inspired to become a non-directed kidney donor by the podcast on kidney exchange

Egg freezing in China and Hong Kong

 The FT has the story:

China’s fertility treatment rules push single women to Hong Kong

Beijing faces calls to ease access to egg freezing and IVF amid demographic crisis

By Eleanor Olcott and Chan Ho-him 

“Beijing has long banned access to egg freezing or IVF for single women. While unmarried men can freeze their sperm, single women such as Sophia, who declined to give her surname, are not allowed to freeze their eggs.

…

“As a result, more and more Chinese women travel abroad for the procedure, with Hong Kong a top destination given its proximity and strong healthcare system.

…

“While it is possible for single or gay women to freeze their eggs in Hong Kong, only married heterosexual couples can access IVF treatment. In practice, that means eggs are stored until women get married and begin the IVF process.”

Surrogacy in Spain is hard to suppress

 In a widely reported story, a Spanish celebrity has become the surrogate mother of her grandchild, with the help of sperm from her deceased son, and an American surrogate.  This has raised controversy in Spain, where surrogacy is illegal.

Here's the Guardian on the story:

Spanish TV star says surrogate baby is actually her grandchild. Ana Obregón, 68, says her son, Aless Lequio García, expressed desire to have a child before death in 2020

"A heated debate in Spain triggered by a 68-year-old celebrity who was reported to have used a surrogate mother in Miami to have a baby took a twist on Wednesday when the woman announced in the socialite magazine ¡Hola! that the baby was actually the daughter of her son who died of cancer in 2020.

...

"Surrogate pregnancies are banned in Spain, although children from such pregnancies in other countries can be registered.

...

"Initial reports about the baby grabbed the attention of the Spanish media and the country’s political parties, sparking criticism from the leftist coalition government. Many leading politicians and outlets of Spanish media refer to surrogacy as “womb renting”.

"The equality minister, Irene Montero of the leftist United We Can coalition partner, said surrogate pregnancies were “a form of violence against women”. The coalition’s Socialist party said legislation should be tweaked to prevent Spaniards using surrogates in other countries.

...

"The main opposition conservative People’s party has said it is open to debating legalising such pregnancies if there is no payment involved."

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Recent related post:

Wednesday, April 5, 2023

Surrogacy under siege in Italy

Surrogacy under siege in Italy

 Opposition to surrogacy in Italy has taken aim at the babies of same sex couples.

The NYT has the story:

Surrogacy Emerges as the Wedge Issue for Italy’s Hard Right. Prime Minister Giorgia Meloni has ordered municipalities to stop certifying foreign birth certificates for same-sex couples who used surrogacy, leaving some babies in a legal limbo.  By Jason Horowitz

"the government of Prime Minister Giorgia Meloni ordered municipalities to obey a court ruling made in December and stop certifying foreign birth certificates of children born to Italian same-sex couples through surrogacy, which is illegal in Italy.

"The decision has left Martino Libero and several other children suspended in a legal limbo, depriving them of automatic Italian citizenship and residency rights like access to the country’s free health care system and nursery school.

...

"Milan, a city that has long served as a cosmopolitan haven for same-sex couples in Italy, has for now complied with the Meloni government order and suspended issuing Italian birth certificates.

"Without official recognition, Libero Martino, 2 months old this month, will have to leave and re-enter the country every few months to remain legal. A court could eventually recognize one of the men as the biological father — they decline to say which one is the sperm donor — and then they could start a separate adoption process for the other.

...

"Ms. Meloni’s government has sought to shift the issue away from the status of the children to the practice of surrogacy, which, while legal in the United States and Canada, is illegal or restricted in much of Europe outside of Greece, Ukraine and a few other countries. In Italy, home of the Vatican, it is not only illegal, but it is also widely opposed, including among Catholic corners of the center-left opposition.

...

"Prominent members of Ms. Meloni’s Brothers of Italy party have called surrogacy a crime “even worse than pedophilia,” in which gay couples, one of whom is usually the biological father, seek to “pass off” children as their own and mistake “children for Smurfs,” saying gay couples can uniquely afford surrogacy, even though it is overwhelmingly used more by heterosexual couples.

"The party is floating a proposal, made by Ms. Meloni when she was a member of Parliament, to make Italians’ seeking of surrogate births abroad — what she had called “procreative tourism” — illegal and “punishable with three months to two years of prison and a fine of 600,000 to a million euros.”

...

"In an interview shortly before her election, as her young daughter ran around her in a Sardinia courtyard, Ms. Meloni said she opposed gay marriage, not because she was homophobic — “I’ve got many, many homosexual friends” — but because she saw it as a step to same-sex adoption, which she opposed, and which the Roman Catholic Church successfully lobbied to exclude from a civil unions law passed in 2016.

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Earlier:

Monday, February 20, 2023

Will Italy criminalize foreign surrogacy?

Surrogacy guidelines: necessity, not convenience

 As surrogacy becomes increasingly well established in the U.S., it is regulated not only by state laws, but  also via voluntary standards put forward by trade organizations as conditions of membership.

One is  the SOCIETY FOR ETHICS IN EGG DONATION AND SURROGACY (SEEDS), which calls itself "a nonprofit organization founded by a group of egg donation and surrogacy agencies, whose purpose is to define and promote ethical behavior by all parties involved in third party reproduction." 

They have a set of guidelines published this year which member organizations are supposed to subscribe to.  One of those guidelines seems to say that surrogacy agencies should only work with intended parents who can't have children on their own. That is, they want to facilitate surrogacies that they regard as necessary rather than those that might be merely convenient.

SOCIETY FOR ETHICS IN EGG DONATION AND SURROGACY, STANDARDS of ETHICAL CONDUCT for SEEDS MEMBER AGENCIES

"24.Agency Screening of Intended Parents

"a. An Agency shall not provide service to Intended Parents unless they demonstrate a need for surrogacy associated with a disease, condition or status characterized by:

"i. the failure to establish a pregnancy or to carry a pregnancy to live birth after regular, unprotected sexual intercourse;

"ii. a person’s inability to reproduce either as a single individual or with their partner without medical intervention; or

"iii. a licensed physician’s or mental health professional’s findings based on a patient’s medical, psychological, sexual, and reproductive history, age, physical findings and/or diagnostic testing. 

*******

The legal blog Above the Law has a post about this:

Should 'Social Surrogacy' Be Permitted? by Ellen Trachman

It says in part:

"What does the law say? States like Louisiana and Illinois specifically require documented medical need of intended parents in a surrogacy arrangement to comply with the state surrogacy law. Louisiana requires that a doctor “who has medically treated the intended mother … submits a signed affidavit certifying that in utero embryo transfer with a gestational carrier is medically necessary to assist in reproduction.”

"Utah previously required “medical evidence … show[ing] that the intended mother is unable to bear a child or is unable to do so without unreasonable risk.” But that provision was struck down by the State Supreme Court after determining it was unconstitutional as applied to a same-sex male couple and could not be read a in gender-neutral way. (The SEEDS standard is, by contrast, gender neutral.)

"Other states with surrogacy-specific statutes — like California, Washington, Colorado, New Jersey, and New York — are silent on medical need and, therefore, implicitly permit social surrogacy arrangements. And then those states with no surrogacy law, much of the country, permit social surrogacy by default.

"The SEEDS standard, of course, only applies to member agencies and does not prevent nonmember agencies from supporting social surrogacy arrangements or for those arrangements to occur independent of agencies."

***********

Stephanie Wang and I anticipated to some extent that this could be an issue in our paper

Roth, Alvin E. and Stephanie W. Wang, “Popular Repugnance Contrasts with Legal Bans on Controversial Markets,” Proceedings of the National Academy of Sciences (PNAS),  August 18, 2020 117 (33) 19792-19798.

We surveyed populations in the U.S. and several other countries on transactions that were legal in some of them and illegal in others. We presented vignettes, and asked if they should be legal.  Because we wanted to give surrogacy a good chance of being perceived as repugnant, we made clear in the surrogacy vignette that there was no medical necessity, it was sought for convenience:

"James and Erica are a married couple in [home country]. They want to have a child, but Erica does not want to become pregnant due to the demands of her career as a model. Maria is a married mother in the Philippines. Maria’s husband is out of work, and Maria has decided to become a surrogate mother to earn additional income. James and Erica hire Maria to carry and give birth to a child from James and Erica’s sperm and egg. James and Erica pay Maria a year’s average income in the Philippines, and everyone signs a contract making it clear that James and Erica are the child’s biological parents and will have custody after the child is born."

You can see in the paper (or in this 2020 blog post) that (even) under these circumstances, clear majorities favored making this kind of voluntary surrogacy legal, not only in the U.S. and Philippines where surrogacy is legal, but also in Spain and Germany where surrogacy is illegal.

The end of anonymous sperm donation...

 In  Colorado, a new law ending anonymous sperm donation seeks to catch up with the technological developments involving genetic sequencing that have already made anonymity of sperm or egg donors fairly fragile. Here's an account in JAMA:

The End of Anonymous Sperm Donation in Colorado--A Step Forward to a New Fertility Future in the US?  by I. Glenn Cohen, JD1; Eli Y. Adashi, MD, MS2; Seema Mohapatra, JD, MPH3   JAMA. Published online October 24, 2022. doi:10.1001/jama.2022.19471

"On May 31, 2022, Colorado became the first state to effectively ban anonymous gamete donation.1 Starting in 2025, fertility clinics in Colorado must collect identity and medical information from sperm and egg donors and may not match donors that do not agree to such disclosure (the statute uses the word “donor” though in many instances compensation is provided). The new law also requires that the clinics make a request that donors update their contact information and medical history at least once every 3 years. The law provides that a donor-conceived person aged 18 years or older shall be provided donor information upon request. The statute purports to also prohibit fertility clinics outside Colorado from providing gametes to Colorado residents (or individuals located in Colorado) if they do not abide by these rules. The statute also instructs clinics not to match a donor once it is known or reasonably should be known that “25 families have been established using a single donor in or outside of Colorado.”1

...

"Two states, Utah and Washington, have enacted statutes requiring the collecting and sharing of identifying information about a donor with donor-conceived children who request it after reaching the age of 18 years.3 However, both states also permit a donor to opt out, thereby limiting the utility of the laws. By contrast, the UK, Germany, Sweden, France, and many other countries have created mandatory registries that donor-conceived individuals can access when they turn 18 years of age, having an effect similar to the new Colorado law.3,4

"The new Colorado law highlights the gap between the law and reality of gamete donor anonymity in the US outside Colorado. Banks have promised donors anonymity in other US states and prior leaks of donor information from banks’ files have been exceedingly rare, if they ever happened at all; the banks have litigated to protect the identifying information provided by the donor.3 But in a practical sense, the promise of anonymity is now much less thoroughgoing.4 Direct-to-consumer genetic testing has become very common, and it has been estimated that 100 million people worldwide have taken a direct-to-consumer genetic test by 2021.4 Studies estimate that a genetic database covering only 2% of the population could match nearly anyone in that population.4 The combination of direct-to-consumer genetic testing, publicly available information, and social media suggest that many donor-conceived individuals will in fact be able to reidentify their gamete donor."

Gay couples, surrogacy, IVF and health insurance

 The Guardian has a story about the obstacles consulting a married gay couple in New York. They have an ongoing lawsuit regarding discrimination in health insurance for IVF. (Much of the article is also about the debate over whether surrogacy is ethical or exploitative):

‘We are expected to be OK with not having children’: how gay parenthood through surrogacy became a battleground  by Jenny Kleeman

"That’s when they first became aware of the eye-watering cost of biological parenthood for gay men. Maggipinto reels off the price list in a way that only someone who has pored over every item could. There’s compensation for the egg donor: no less than $8,000 (£6,600). The egg-donor agency fee: $8,000-10,000. The fertility clinic’s bill (including genetic testing, blood tests, STD screening and a psychiatric evaluation for all parties, sperm testing, egg extraction, insemination, the growing, selecting, freezing and implantation of the resulting embryos): up to $70,000. And that’s if it all goes well: if no embryos are created during a cycle, or if the embryos that are don’t lead to a successful pregnancy, they would have to start again.

"Then there’s the cost of a surrogate (called a “gestational carrier” when they carry embryos created from another woman’s eggs). Maggipinto and Briskin were told agency fees alone could stretch to $25,000, and the surrogates themselves should be paid a minimum of $60,000 (it is illegal for surrogates to be paid in the UK, but their expenses are covered by the intended parents). “That payment doesn’t include reimbursement for things like maternity clothing; lost wages if she misses work for doctors’ appointments or is put on bed rest; transportation; childcare for her own children; [or] lodging.” It takes 15 minutes for Maggipinto to run me through all the expenses they could incur if they tried to have a child genetically related to one of them. The bottom line? “Two hundred thousand dollars, minimum,” he says.

...

"Briskin used to work for the City of New York as an assistant district attorney, earning about $60,000 a year. His employment benefits had included generous health insurance. But when they read the policy, they discovered they were the only class of people to be excluded from IVF coverage. Infertility was defined as an inability to have a child through heterosexual sex or intrauterine insemination. That meant straight people and lesbians working for the City of New York would have the costs of IVF covered, but gay male couples could never be eligible.

...

"There’s a stark contrast between American and Ukrainian surrogates, Maggipinto says. “Here you have to be a woman who has already had children, who is over a certain age, who can prove that she is independently financially capable of sustaining herself without her surrogate compensation. You effectively cannot be a poor surrogate.” He is referring to the American Society for Reproductive Medicine’s guidelines, but with no official regulation in the US, there’s no compulsion for anyone to follow them.

...

"The EEOC will rule on whether the terms of Briskin’s health insurance were discriminatory within a few weeks. The City of New York has so far defended its policy. The couple’s attorney, Peter Romer-Friedman, tells me: “They say their healthcare plan doesn’t provide surrogacy for anyone, so it’s not discrimination to deny it to Corey and Nicholas.” Just like everyone else, the city’s first response was to assume this was all about access to surrogacy."

The first children with germline-edited genomes are growing up: the CRISPR story so far

 Nature has the story:

The CRISPR children.  In China, the first children with germline-edited genomes are growing up.  by Vivien Marx

"Three years ago, the world was in uproar after a journalist broke the news about two babies born with genomes edited with CRISPR-Cas9. He Jiankui had been invited to speak in the session on human embryo editing at the Second International Summit on Human Gene Editing. Some of He’s advisors thought he should speak about the twins, while others advised him to wait until his manuscripts were published, and He was purportedly leaning toward focusing just on preclinical work. Then, when the news of the twins’ birth was revealed, he adjusted existing slides to address the news.

....

"The goal of these heritable gene edits was to generate HIV-resistant people, by introducing germline mutations into the C-C chemokine receptor type 5 (CCR5) gene, which encodes a co-receptor for HIV. This thinking was roundly criticized by researchers and ethicists because of a lack of a medical need given the availability of antiretroviral treatments.He’s rationale for germline editing was that the gene was well studied, that HIV remains a devastating disease and that HIV infection status leads to discrimination. The participants in this study were HIV-discordant couples: the wives are HIV negative and their husbands are HIV positive and being treated with antiretroviral drugs.

...

"As the chorus of criticism around the experiments mounted in the days after the announcement, He disappeared from public view. Some assumed he was given a kind of escort who accompanied him around campus and monitored him. In January he was fired from his university post, and apparently detained some time thereafter.The Chinese authorities initially touted He’s achievement, then backtracked, condemned the work and shuttered the lab. After a trial in Nanshan District People’s Court behind closed doors, He was sentenced to a fine and three years in jail for ‘illegal medical practice’, along with two members of his team.

...

"One key concern for the children is genetic mosaicism—a condition in which different cells from the same individual have different genomes. Such conditions can occur naturally during development, for example through post-zygotic mutations, when mitosis proceeds irregularly and mutated cells persist. It can also happen when, after an environmental insult, a DNA break is not properly repaired.

...

"Whitehead Institute researcher Rudi Jaenisch says that mosaicism is a major problem with current approaches to heritable embryo editing. When genome edits take place after a zygote has become a two-cell or multicellular blastocyst—as likely occurred in He’s experiments—the edited and unedited cells keep dividing.

...

"Adashi fears that, given how imperfect the gene-editing tools are, the type of genetic and genomic “mayhem” that can result might lead to the loss of entire chromosomes or pieces of them. “Basically they could have a scrambled genome,” he says about the girls. He points to several papers showing such damage when CRISPR-Cas9-based gene editing is performed in human embryos.

...

"Rather than edit embryos, both Jaenisch and Church think that if germline gene editing is ever considered, it would be more promising to, for example, edit spermatogonial stem cells that give rise to sperm. But for now neither heritable gene editing in embryos nor germ-cell editing are considered ready for application in people.

"What happened in He’s lab, says Musunuru, is a textbook ethics violation that should be extensively analyzed and discussed. To date, the manuscripts describing the work that led to the gene-edited children have not been published in a journal or placed on a preprint server (Box 2). But since the birth of Lulu, Nana and Amy, a host of reports about the safety and ethics of gene editing have been published.

...

"They may well grow up healthy, says Adashi. Considering the risks endured in their creation, that would be a wonderful outcome. But he worries that germline gene editing “has a significant potential to cause harm rather than good.”

“How and if it will manifest is unknown,” he says. It’s certainly no way “to start life.”

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Earlier:

Monday, December 14, 2015

Technology watch: does Crispr create a new class of repugnant transactions?

Deceased donor sperm recovery and conception

I guess it's a case of deceased donor transplantation of sorts. Above the Law has the story:

Posthumous Conception: It Happens More Often Than You Think by Ellen Trachman

 "In the latest high-profile controversy over posthumous conception, last month, we learned of the birth of a baby girl to an Australian woman named Ellidy Pullin, the widow of Olympic snowboarder Alex “Chumpy” Pullin. The Olympian died tragically in a diving accident in 2020.

"Ellidy Pullin turned to their fertility doctor, Andrew Davidson, and asked that her spouse’s sperm be harvested from his body after his death. Davidson described how he entered fertility medicine never expecting to do posthumous sperm retrievals, but now, those requests are becoming more common. The doctor noted that he has done two other posthumous sperm retrievals since the Olympian’s death.

"The process was successful for Pullin — as Davidson notes, it usually is, so long as the sperm is successfully retrieved within 48 hours of death.

...

"In the United States, the hospital itself is the most frequent obstacle that prevents a surviving loved one from having a chance to conceive with the DNA of their deceased spouse or partner. Many hospitals are unwilling to permit the retrieval of reproductive material without specific written consent. And by specific consent, that frequently means not just that the deceased wanted to have children with the survivor. The bar is often set higher. The consent must be that the deceased specifically agreed for their sperm or eggs to be harvested and used for reproductive purposes after their death."

An IVF mixup of babies

 Here are the stories, from the Guardian, and the NY Times:

Guardian:

California women gave birth to each other’s babies after IVF mix-up. Couples to sue clinic after raising girls for months that were not theirs, says lawsuit, before babies were swapped back

"Two California couples gave birth to each other’s babies after a mix-up at a fertility clinic and spent months raising children that were not theirs before swapping the infants, according to a lawsuit filed in Los Angeles.

"Daphna Cardinale said she and her husband, Alexander, had immediate suspicions that the girl she gave birth to in late 2019 was not theirs due to the child’s darker complexion.

"They suppressed their doubts because they fell in love with the baby and trusted the in vitro fertilisation process and their doctors, she said. Learning months later that she had been pregnant with another couple’s baby, and that another woman had been carrying her child, caused enduring trauma, she said.

...

"The two other parents involved in the alleged mix-up wish to remain anonymous and plan a similar lawsuit in the coming days, according to the attorney Adam Wolf, who represents all four parents.

"The lawsuit claims CCRH mistakenly implanted the other couple’s embryo into Daphna and transferred the Cardinales’ embryo – made from Daphna’s egg and Alexander’s sperm – into the other woman.

"The babies, both girls, were born a week apart in September 2019. Both couples unwittingly raised the wrong child for nearly three months before DNA tests confirmed that the embryos were swapped, according to the filing.

“The Cardinales, including their young daughter, fell in love with this child, and were terrified she would be taken away from them,” the complaint says. “All the while, Alexander and Daphna did not know the whereabouts of their own embryo, and thus were terrified that another woman had been pregnant with their child – and their child was out in the world somewhere without them.”

"The babies were swapped back in January 2020.

"Mix-ups like this are exceedingly rare, but not unprecedented. In 2019, a couple from Glendale, California, sued a separate fertility clinic, claiming their embryo was mistakenly implanted in a New York woman, who gave birth to their son as well as a second boy belonging to another couple.

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NY Times:

‘We Had Their Baby, and They Had Our Baby’: Couple Sues Over Embryo ‘Mix-Up’  Daphna and Alexander Cardinale, the plaintiffs in a lawsuit against a Los Angeles-area fertility clinic, say they endured a painful custody exchange after DNA testing.  By Neil Vigdor

...

"Peiffer Wolf Carr Kane & Conway, the law firm representing the Cardinales, estimated that the couple had paid $50,000 to the fertility clinic for the treatments.

...

"Mr. Cardinale, 41, said during the news conference on Monday that the most upsetting aspect of the ordeal had been breaking the news to the couple’s older daughter, who begged her parents to keep the baby.

“How do you explain that to a 5-year-old?” Mr. Cardinale said."

Same sex marriage now legal in Switzerland, by popular referendum

 The BBC has the story (it happened last month, but I wasn't paying attention):

Switzerland same-sex marriage: Two-thirds of voters back yes

"Some 64% supported the measure, making it one of the last countries in western Europe to legalise same-sex marriage.

...

"In the build up to the vote, church groups and conservative political parties opposed the idea, saying it would undermine the traditional family.

"Switzerland has allowed same-sex couples to register partnerships since 2007, but some rights are restricted.

"The measure will make it possible for same-sex couples to adopt unrelated children and for married lesbian couples to have children through sperm donation.

"It makes Switzerland the 30th country in the world to adopt same-sex marriage.

...

"Justice Minister Karin Keller-Sutter said the first same-sex marriages would take place in July next year.

"Whoever loves each other and wants to get married will be able to do so, regardless of whether it is two men, two women, or a man and a woman," she said.

...

"Over the last 20 years, most countries in western Europe have recognised same-sex marriage. However, in Switzerland many big decisions go to a nationwide ballot, and this can slow down major changes to social legislation.

"The new law, which had the backing of the Swiss government and all major political parties except the People's Party, was passed by parliament in December."

New York State's new surrogacy law takes effect

NBC has the story:

No Longer an Outlier: New York Ends Commercial Surrogacy Ban.  New York's longstanding ban on commercial surrogate pregnancy is about to end nine years after a bill to rescind it was first introduced.    By David Crary

"Instead of being a national outlier, New York will become a leader, according to experts on surrogacy . They say the new law, passed in April and taking effect on Monday, has a surrogates’ bill of rights providing the nation’s strongest protections for women serving as surrogates.

"Among the provisions: the right to independent legal representation, a guarantee of comprehensive medical coverage, and the right to make their own health care decisions, including whether to terminate or continue a pregnancy.

“We went to California because it had the best laws,” Hoylman said. “Now New York has the best law. We think it’s a model for other states.”

"The new law allows gestational surrogacy on a commercial basis, involving a surrogate who is not genetically related to the embryo. An egg is removed from the intended mother, fertilized with sperm and then transferred to a surrogate — in contrast to so-called traditional surrogacy that involves an egg from the surrogate. The gestational option is welcomed by many LGBTQ people who want to be parents, as well as by couples struggling with infertility.

"With the change in New York, surrogacy advocates say only Louisiana and Michigan have laws explicitly prohibiting paid gestational surrogacy. Nebraska has no explicit ban, but a statute there says paid surrogacy contracts are unenforceable.

...

"Gestational surrogacy routinely costs between $100,000 and $150,000. Hoylman declined to estimate the total costs incurred by him and Sigal but said, “It was worth every penny.”

"Among the standard costs are fees for lawyers and the surrogacy agency, the cost of in vitro fertilization, plus compensation and health insurance for the surrogate. Compensation rates vary widely — generally $25,000 to $50,000.

"The first bill seeking to repeal the New York ban was introduced by Assemblywoman Amy Paulin in 2012, the year Hoylman was elected to the Senate. It floundered for years in the face of staunch opposition by the Roman Catholic Church and some feminists, who argued that paid surrogacy led to the exploitation of women.

“Under this bill, women in economic need become commercialized vessels for rent, and the fetuses they carry become the property of others,” renowned feminist Gloria Steinem wrote to lawmakers in 2019.

"New York Gov. Andrew Cuomo, who earlier in his tenure pushed hard to legalize same-sex marriage, argued in response that the surrogacy ban was “based in fear, not love” and was especially harmful to same-sex couples."

HT: Nick Arnosti.

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Here's a related story from the NY Times:

Meet the Women Who Become Surrogates. New York State will now allow gestational surrogates to carry babies for other parents. Here’s why they do it.   By David Dodge

"In 1995, Lisa Wippler, having recently retired from the Marines, moved with her husband and two young sons to Oceanside, Calif., and was contemplating her next chapter in life. The answer came while lying in bed one night, reading an article about infertility.

...

"Last year, Ms. Wippler — by this point a three-time surrogate herself — was part of a delegation of surrogacy advocates who traveled to Albany, where she had the opportunity to share her story with lawmakers considering whether to legalize the practice in New York State.

...

"In her advocacy work, Ms. Wippler said, she has been befuddled to hear the arguments put forward by opponents — some of whom contend the surrogacy industry preys on poor and vulnerable women.

“I’m a retired Marine,” she said. “I can guarantee you no one coerced me.”

...

"A surrogate’s compensation varies by a number of factors, including geographic location and whether she is a first time or experienced carrier. At the Los Angeles-based agency where Ms. Wippler now works as the director of surrogate admission, the range falls between $30,000 and $60,000, which is typical across the industry in the United States, she said."

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Earlier post: 

Wednesday, April 22, 2020

Surrogacy finally becomes legal in New York

Surrogacy still repugnant (and illegal) in Michigan

Michigan is now one of only a handful of U.S. states that criminalize commercial surrogacy and/or don't recognize (or severely restrict) parental rights in gestational surrogacy. The NY Times has the story about Michigan resident surrogate parents of twins, from their own eggs and sperm, who have to jump through hoops to adopt them.

Couple Forced to Adopt Their Own Children After a Surrogate Pregnancy. Tammy and Jordan Myers will have to adopt their twins after two Michigan judges denied them parental rights because the children had been carried by a surrogate.  By Maria Cramer

"Twice, judges have denied their requests to be declared the legal parents of the twins, even though a fertility doctor said in an affidavit that the babies are the couple’s biological children. In separate affidavits, the surrogate and her husband have agreed that the Myerses are the parents of the twins.

"The Myerses have started the adoption process, which will entail home visits from a social worker, personal questions about their upbringing and their approach to parenting, and criminal background checks. They said they have already submitted their fingerprints.

...

In 2020, New York passed a law that lifted its ban against compensating women who act as surrogates. Louisiana prohibits compensating surrogates but recognizes agreements or contracts in which a woman has volunteered to be a surrogate, Mr. Vaughn said. The state allows such agreements only for married heterosexual couples.

"But Michigan has a far-reaching law that does not recognize any agreement with a woman who agrees to be inseminated or implanted with an embryo, he said. The law also does not recognize the parental rights of the intended parents.

...

"Under Michigan’s law, paying a woman to act as a surrogate is a felony punishable by up to five years in prison and a $50,000 fine, said Melissa Neckers, the lawyer for the couple.

...

"In 2015, the Myerses were trying to have a second child when Ms. Myers, 39, learned she had breast cancer. She immediately had her eggs harvested before undergoing multiple surgeries, including a partial hysterectomy and a bilateral mastectomy.

...

"In a post on Facebook, the couple described their story and need to find an unpaid volunteer who would be willing to help them have a baby. Ms. Vermilye, 35, who also lives in Grand Rapids, read the post and sent them a note saying she was interested.

“My husband and I had talked about how I had a gift of carrying and delivering very easily,” said Ms. Vermilye, who has a girl and a boy who are 6 and 9. “We felt like it was kind of unfair that we had it so easy and have friends and family that don’t."

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The United States Surrogacy Law Map.  State-by-State Gestational Surrogacy Law & Statutes

Another pandemic shortage: donor sperm

 Sperm from conventional sperm banks is now in short supply. But there are "known donor" peer to peer websites and Facebook groups for direct donation, without a sperm bank:

The NY Times has the story:

The Sperm Kings Have a Problem: Too Much Demand  By Nellie Bowles

"Many people want a pandemic baby, but some sperm banks are running low. So women are joining unregulated Facebook groups to find willing donors, no middleman required.

...

"“We’ve been breaking records for sales since June worldwide not just in the U.S. — we’ve broken our records for England, Australia and Canada,” said Angelo Allard, the compliance supervisor of Seattle Sperm Bank, one of the country’s biggest sperm banks. He said his company was selling 20 percent more sperm now than a year earlier, even as supplies dwindled.

...

"Michelle Ottey, director of operations at Fairfax Cryobank, another large sperm bank, said demand was up for access to its catalog for online sperm shopping because “people are seeing that there is the possibility of more flexibility in their lives and work.”

...

"About 20 percent of sperm bank clients are heterosexual couples, 60 percent are gay women, and 20 percent are single moms by choice, the banks said.

...

"Each vial from a premium bank can cost up to $1,100. The bank guarantees a vial will have 10 million or 15 million total motile sperm. Each month, during ovulation, a prospective mother (or her doctor) unthaws a vial and injects the sperm.

"The recommendation is to buy four or five vials per desired child, since it can easily take a few months of trying to get pregnant. And since donors sell out fast, if a woman wants two children with the same donor, she needs to be ready with about $10,000.

...

"Apps for finding donors, like Modamily and Just a Baby, popped up. So did Known Donor Registry, where some 50,000 members arrange the giving and receiving of sperm. Facebook groups with tens of thousands of members — where men will post pictures of themselves, often with their own children — began advertising themselves to interested parties.

...

"The legal risk for both parties — risk that a mother will ask the donor for child support, and risk that a donor will want custody — is high, and the laws around this are not consistent in every state. The women who turn to Facebook groups for sperm tend to be unable to afford traditional sperm banks.

Matching for platonic co-parenting

 The Guardian has the story, if you're looking for a co-parent rather than a life partner:

‘I wanted to meet a mate and have a baby without wasting time’: the rise of platonic co-parenting--They’re ready to start a family, but can’t wait for The One. As ‘mating’ sites boom under lockdown, we meet those hoping for a better way to raise a child

"In a world where biological science and equal rights have diversified ways to start a family, platonic co-parenting – the decision to have a child with someone you are not romantically involved with and, in most cases, choose not to live with – remains a relatively new phenomenon.

"Well established in gay communities, along with egg and sperm donation, it is on the rise among heterosexual singles. Tens of thousands have signed up to matchmaking sites at a cost of around £100 a year. On Coparents.co.uk, which launched in Europe in 2008, two-thirds of its 120,000 worldwide members are straight. Modamily, which launched in LA in 2012, has 30,000 international members, of whom 80% are straight and 2,000 are British. UK-based competitor PollenTree.com has 53,000 members, split 60/40 women to men, and ranks its domestic market as its strongest. During lockdown, the latter two sites reported traffic surges of 30-50%."

Should deceased donors be allowed to donate sperm?

Deceased donor sperm donation is the subject of an article earlier this year, in light of the shortage of donated sperm in the UK:

Hodson N, Parker J. "The ethical case for non-directed postmortem sperm donation,"
Journal of Medical Ethics 2020;46:489-492.

Abstract: In this article we outline and defend the concept of voluntary non-directed postmortem sperm donation. This approach offers a potential means of increasing the quantity and heterogeneity of donor sperm. This is pertinent given the present context of a donor sperm shortage in the UK. Beyond making the case that it is technically feasible for dead men to donate their sperm for use in reproduction, we argue that this is ethically permissible. The inability to access donor sperm and the suffering this causes, we argue, justifies allowing access to sperm donated after death. Moreover, it is known that individuals and couples have desires for certain sperm donor characteristics which may not be fulfilled when numbers of sperm donors are low. Enacting these preferences contributes significantly to the well-being of intended parents, so we argue that this provides a pro tanto reason for respecting them. Finally, we explore the benefits and possible disadvantages of such a system for the various parties affected.

"The United Kingdom (UK) has a shortage of donor sperm. In 2016 there were 2273 donor insemination treatment cycles; 42% of the women registering had a male partner, 41% had a female partner and 17% were single.1 The average number of newly registered sperm donors per year between 2011 and 2013 was 586, an increase from 2004 where there were 237 donors.2 Yet this increase includes donations for specific use by a known individual to create one offspring. In 2016 the Human Fertilisation and Embryology Authority (HFEA) reported 4306 in vitro fertilisation (IVF) treatment cycles with ‘own eggs and donor sperm’ and 924 treatment cycles with ‘donor egg and donor sperm’.1 Clearly there is high demand for donor sperm and HFEA reports demonstrate this is increasing.1

"Commercial imports have been the mainstay of UK efforts to keep up with increasing demand for donor sperm.1 The Department of Health and Social Care estimates that 4000 samples were imported from the USA and 3000 from Denmark in addition to samples from other European Union (EU) countries.3 The HFEA highlights that imports are used to plug the gap because "the cost, time and resources required to recruit donors themselves is too high when there are specialist sperm banks who can carry out an efficient and reliable service".4 The Department of Health and Social Care has raised concerns that the UK's departure from the EU may worsen this state of affairs.3
...
"There are barriers to donating sperm in life that may prevent some men acting on their desire to help others or see their genes continue into future generations through donation. Posthumous sperm donation avoids most of these problems, allowing men to access the positives of sperm donation without the drawbacks. Living kidney donation provides an informative comparison between the motivations to donate in life versus after death. It is difficult to overestimate the value of donated kidneys to those individuals on the transplant list. Many people feel the pull of altruism and have a desire to help those who need a kidney transplant. Yet the potential costs of donating during life mean that individuals would rather donate after death when those costs are eliminated.16 Gamete donation after death parallels kidney donation by offering the same benefits as donation in life with fewer drawbacks, thereby both incentivising men to donate and providing greater opportunity to fulfil some of their reproductive and altruistic desires. This makes voluntary postmortem sperm donation an attractive addition to living donation.
...
"Given the potential impact of postmortem sperm donation on the family, policy decisions could be used to soften the implications of postmortem sperm donation for the family. For our purposes, the important point is that considerations of the family, including a romantic partner surviving the deceased man, do not justify a blanket ban on the use of sperm collected after death, especially if the donor has specified a desire to donate.
...
"The UK consensus is that gametes ought not to be bought although donor expenses should be covered.37 We do not take a view on this generally, but note the dissonance generated when sperm from countries such as Denmark where ‘vendors’ have been paid is used in the UK.38 In so far as society benefits from a coherent bioethical policy reflecting its shared values, using dead donors rather than donors who were paid in other countries to bolster supplies might provide a more coherent policy.