The Influence of Mary Warnock

Philosopher and public intellectual Helen Mary Warnock died on 20 March 2019, at age 94 years. (See here and here.)

Baroness Warnock’s imprint marks not only public policy in the United Kingdom, but also the public policies of much of the western world, particularly in the arenas of assisted reproductive technologies and embryo research. She famously chaired the Committee of Inquiry into Human Fertilisation and Embryology, 1982-84.

The Warnock Committee (as it came to be called) was formed to advise Parliament regarding, inter alia, in vitro fertilization (IVF) after the 1978 birth announcement of Louise Joy Brown, the world’s first “test-tube baby.” The committee chose to assign 14 days as the limitation for embryo research. That is, embryos could be used for research for up to 14 days post-fertilisation—not including freezer time for those that were cryopreserved.

Mary Warnock contributed the idea that a specific number of days, as opposed to a particular stage of the embryo, be used as a limit for legal purposes. She admitted that 14 was an arbitrary number, and explained the rationale to The Observer’s Robin McKie in December 2016:

“Before 14 days, it is absolutely certain – beyond any doubt whatsoever – that there are no beginnings of a spinal cord in an embryo,” says Warnock. “That means that whatever is done to the embryo during that period it cannot be feeling anything. And yes, it was a pragmatic decision. Everyone can count up to 14, after all.

“After this stage, however, development of the embryo becomes very rapid and it develops quickly towards becoming a foetus with a spinal cord and a central nervous system. So that is why we came up with that limit.” (https://www.theguardian.com/science/2016/dec/04/embryo-research–leap-forward-step-too-far)

Parliament embraced the Warnock Committee’s recommendations including the use of embryos for research, and codified these into law, primarily The Human Fertilisation and Embryology Act of 1990. The idea of a time-limited rule for embryo research spread. By 2016, ten other nations besides the U.K. had enshrined in law a 14-day limit: Australia, Canada, Denmark, Iceland, Netherlands, New Zealand, Slovenia, South Korea, Spain, and Sweden. Uniquely, Switzerland restricts embryo research to seven days. Five nations maintain the “guideline” of 14-days: India, Japan, Mainland China, Singapore, and the United States. (https://www.nature.com/news/embryology-policy-revisit-the-14-day-rule-1.19838)

Mary Warnock’s influence impacted more than IVF and embryo research. Before she chaired the Committee that bears her name, Warnock served in a variety of posts. She was a member of the Independent Broadcasting Authority; then came a stint on the Royal Commission on Environmental Pollution; she chaired the Committee of Enquiry into Special Educational Needs; and she also presided over “a Home Office committee on the use of animals in laboratories” (Mary Warnock, A Memoir – People & Places (London: Duckbacks, 2002), 31-2).

Warnock did not back away from controversy. In 2008, she wrote “A Duty to Die?” for a Norwegian publication. She explained her views further in The Telegraph:

“I wrote it really suggesting that there’s nothing wrong with feeling you ought to do so for the sake of others as well as yourself.”

She went on: “If you’ve an advance directive, appointing someone else to act on your behalf, if you become incapacitated, then I think there is a hope that your advocate may say that you would not wish to live in this condition so please try to help her die.

“I think that’s the way the future will go, putting it rather brutally, you’d be licensing people to put others down.”

(https://www.telegraph.co.uk/news/uknews/2983652/Baroness-Warnock-Dementia-sufferers-may-have-a-duty-to-die.html)

Mary Warnock was indeed a public intellectual. She applied her nimble mind to a wide variety of topics. Although her pen has stilled, her widespread influence continues. Her strongly-argued utilitarian positions of embryo usage and death advocacy necessitate able rebuttals for the defense of the most vulnerable among us.

An IVF Keepsake?

As a father of two teenagers (and one who will join that esteemed company in a month), I am fluent in “sarcasm,” the native tongue of this group. Mine only use English sparingly, to do business. So, I often read headlines of stories in newspapers (remember those?) and online as sarcastic, and the articles they lead as spoofs. This one, in the “Parenting” section of an Australian web journal called “Kidspot,” immediately led me there. It speaks of a company that will take embryos from in vitro fertilization (IVF) that have not been implanted, and for which the biological parents have no plans of implanting, and turn them into keepsake jewelry. But this is no spoof.

The couple interviewed in the piece, having completed a 6-year journey through infertility and IVF, has a 4-year old son and twin toddlers. With seven remaining embryos, they had a decision to make. For them, “Donation wasn’t an option, the annual storage fee was an added financial strain, and disposing of them unimaginable.” Enter a company called “Baby Bee Hummingbirds,” who placed the embryos in a heart-shaped pendant.

My first impulse, not without some merit, was to find this all a rather ghastly business. Each of these embryos is a unique genetic human created in the image of God. I find myself critical of parents who don’t seem to have fully thought out the ramifications of fertilizing ten or more eggs. If these are genuinely human beings, then the creation (if that’s the right word) of “leftovers” is itself deeply problematic. It takes a great deal of restraint for a mother, who must have eggs harvested after a somewhat risky hyperovulatory cycle, and the physician, who will be judged on the success rates of achieving pregnancy, to fertilize only enough embryos to be implanted once. That is understood. But the ethical choice usually follows the more difficult path of restraint, and that includes the decision on how many embryos are to be made.

On another level, one which is a bit more gracious, perhaps, I try to see some redemptive value in this. Presumably “donation” was for medical research, for which I would commend the parents’ avoidance. It does not mention embryo adoption, which could fall under “donation” and would be ethically the best decision. But, with hundreds of thousands of human embryos in liquid nitrogen in fertility clinics across the United States alone, this is no full solution to the problem, and shouldn’t be seen as an easy “out” ethically. In the parents, there is a reflection that these are more than just unwanted clumps of cells, as something beautiful is being attempted to serve as a kind of memorial to the lives that could have fully developed. Maybe this is some effort to take something, quite literally ashes, and redeem it. Maybe it is a message to the world that we should all think a lot harder about what assisted reproduction fully means, and to what it speaks of human life. We sometimes carry the cremated ashes of loved ones with us as a reminder of their significance, after all. Perhaps this helps affirm the humanity of these embryonic humans?

Yet…this ultimately shows us what kind of a mess we have created. We feel better about children that we never gave the opportunity to breathe and walk and talk because we have made something pretty to carry them around “close to our hearts.” That the parents made the choice that these embryos will not live on can’t be lost here.

From the mother interviewed:

“Finding this has brought me so much comfort and joy.
I [am] finally at peace and my journey complete.
My embryos were my babies – frozen in time.
When we completed our family, it wasn’t in my heart to destroy them.
Now they are forever with me in a beautiful keepsake.”

Assisted reproduction has been described as the “wild, wild West” ethically…there is little regulation of the industry worldwide, it exists in (to use another metaphor) “uncharted waters,” and it has offered hope to people who desperately dream of loving a child…and may spare no expense or physical burden to achieve it. I can speak to the difficult journey of infertility because my wife and I traveled it. We set our boundaries early and held to them, but could easily see how each step leads to the next, and how gut-wrenching it is to say, “done.” This is not a critique of IVF per se. It is a reminder that anyone who undertakes the process (or, indeed, makes the decision to bring children into the world) should reflect on the motives behind and consequences associated with it.

This industry, this process, at its worst, instrumentalizes children. It takes a beautiful desire that has been met with profound pain and somehow convinces us that we have a right to children…children who look like us, will give us an ideal-sized family, and (ultimately and chillingly) will be the best that science can make. It is when children become a means, maybe the means to our fulfillment, that we lose sight of the sacrificial love that parenting represents. In a world of idols, this is another, and it is one that is consequential.

PGD, BRCA, and the difference between Diseases and Risk Factors: “The lamps are going out . . .”

It is currently estimated that up to 65% of women with the BRCA gene mutation will develop breast cancer. Monday’s Wall Street Journal (WSJ) reported on the growing number of women with the BRCA gene mutation who are undergoing in-vitro fertilization, having the resultant embryos tested for the presence of the mutation via preimplantation genetic diagnosis (PGD), and choosing to implant only those free of the mutation.

PGD has been used for years, typically for parents to selectively implant embryos free of certain genetic diseases — the kind where if you have the gene, you have the disease. It has been occasionally used to select embryos of a certain sex, or embryos with a characteristic such as deafness to match parental characteristics. In other words, it has been used to select out embryos who actually have a disease or characteristic.

The use of PGD mentioned in the WSJ article is something subtly but altogether different. Whereas other uses of PGD select out embryos with a certain disease, screening based on the BRCA gene is used to select out healthy embryos. These are embryos who do not have a particular disease, but who have risk factors for a particular disease.

This is a fundamental distinction. People who have the BRCA mutation are not sick! They don’t have any disease! If they develop cancer, then they will have a disease. But “Having the BRCA mutation” is not a disease! Approximately 35% of people with the mutation will never have the disease associated with the mutation. For the others, preventive measures and treatments are available. (I am not here pretending that the preventive measures and treatments are fun and easy. But they available and mainstream, not experimental.)

The rationale of one person in the article is, “I thought, if I could have a healthy baby who doesn’t have to worry about the same thing I did, why wouldn’t I?” And, “. . . doing PGD to avoid passing on the BRCA mutation seemed like an obvious precaution.” In other words, the decision was a no-brainer.

But if it’s a no-brainer to select out embryos with the BRCA mutation, then it’s equally a no-brainer to select out embryos with genetic predispositions to all kinds of things: heart disease, diabetes, social anxiety disorder, baldness, ingrown toenails, erectile dysfunction . . .

It was at the moment that it became acceptable to profile embryos and weed out those who didn’t meet our arbitrary criteria that we started down this road. I am afraid we will not be able to stop before it reaches its inevitable, logical conclusion. (Seen Gattaca lately?)

 

 

PGD and lives not worth living

A colleague just e-mailed me about an article in Monday’s New York Times titled “Ethics Questions Arise as Genetic Testing of Embryos Increases”. The article focused on the decision of Amanda Kalinsky and her husband to use preimplantation genetic diagnosis (PGD) to have unaffected children after a genetic test at age 26 showed that she had the gene for Gerstmann-Straussler-Scheinker disease, a rare form of transmissible spongiform encephalopathy. The disease is a neurodegenerative disorder that usually has its onset of symptoms between age 35 and 55 and progresses to death within 2 to 10 years. Ms. Kalinsky has multiple family members who have suffered from the disease including her father. The article pointed out that the use of PGD is growing rapidly to allow potential parents with genetic disorders in their families to screen for the disorders and only implant embryos free of the disease. The center that did the PGD for the Kalinskys has tested embryos from over 2500 couples.

The article presented opinions from several ethicists on the morality of using PGD to select unaffected embryos, particularly for disorders that do not become evident until adulthood. They range from Janet Malek from Brody School of Medicine who said that “people who carry a gene like GSS have a moral duty to use preimplantation diagnosis — if they can afford it — to spare the next generation” to David Wasserman from Yeshiva University who pointed out that “eliminating embryos with such genes is essentially saying someone like Ms. Kalinsky should never have been born.”

The most disturbing were the statements made by Ilan Tur-Kaspa the founder of the fertility clinic used by the Kalinskys. He said that couples like the Kalinskys have three choices: do no testing and hope for the best, conceive naturally and have prenatal testing and then choose whether to abort, or do IVF with PGD. He fails to include the fourth option which Ms. Kalinsky originally had considered which is to choose not to have children at all. While several of the ethicists quoted in the article mentioned concerns about doing PGD for diseases that appear in adulthood or for genes that only increase the risk of diseases late in life, Tur-Kaspa was reported to have said that “after having done the procedure a thousand times, he cannot think of a gene he would not test for if a patient requested it.” He also said that in the majority of his patients PGD is done without testing the potential carrier first who does not want to know his or her own genetic status. The embryos are simply tested for the disorder that runs in the family and only unaffected embryos are implanted. He said that “if all the embryos carry the faulty gene, the couple is told that none of their embryos was viable, which can happen with or without a mutated gene.”

The problem with IVF and PGD, particularly when done for diseases that manifest themselves in adulthood or for genes that only confer an increased risk of a disease such as breast cancer, is that the embryos that are discarded are viable. They are just like Ms. Kalinsky was when she was an embryo. As Wasserman pointed out the destruction of such embryos with an unwanted gene is saying that people who have genetic disorders have lives that are not worthy of being lived. The selection of embryos free from a genetic disorder involves the rejection of the embryos who have the disorder. It says to people currently living with genetic disorders and disabilities that it would have been better if their disorder had been found when they were embryos so their lives could have been ended before they were born. Those who practice IVF with PGD need to be honest about what they are doing. They are not discarding nonviable embryos. They are discarding embryos who are expected to grow up into people who have disabilities and not allowing them to live. We should never say that having a disability means that a person’s life is not worth living. None of us is without our flaws. If some lives are not worth living, how can we say that our lives are worth living and theirs are not?

Thoughts on varied subjects: commercial surrogacy, professionalism, and Obamacare

A potpourri of stories from this week that prompted bioethical musings, in no particular order . . .

The BBC News website ran a fascinating, heartbreaking story this week about women in India who are paid to gestate other women’s babies: commercial surrogacy, a billion-dollar-a-year industry in India. The main figures in the story — a woman named Vasanti living in a dormitory for commercial surrogates, who is carrying a baby for a Japanese couple; and the doctor who runs the IVF clinic and dormitory — spend much of the story talking about how positive the practice of surrogacy is. Thus it is jarring — and revealing —  to get to the last sentence in the story, where Vasanti says, “. . .we want a good future. That’s why we [did] this, and not in my entire life do I want my daughter to be a surrogate mother.” (Italics mine)

***

Last week’s JAMA ran a narrative by Gordon Schiff, MD, which begins,

It’s 5 PM on a Friday afternoon. After 2 hours on the telephone trying (and failing) to get her insurance plan to pay for her medication refill, I reached into my pocket and handed the patient $30 so she could fill the prescription. It seemed both kinder and more honest than sending her away saying, “I’m sorry I can’t help you.” While I hardly expected a commendation for such a simple act of kindness, I was completely surprised to find myself being reprimanded for my “unprofessional boundary-crossing behavior” after the resident I was supervising shared this incident with the clinic directors.

(If you have a JAMA subscription you can read the whole thing here, otherwise it has been reposted for free  here.) Dr. Schiff’s reflections on this incident are eloquent and worth reading and pondering. From the perspective of a Christian physician who also works with the underserved, I am saddened at how far our profession strays from its moral foundations when  a detached, medicine-as-business model replaces the self-giving care that Christ modeled.

***

You may have missed it, but new provisions of the enormous law affectionately known as “Obamacare” went into effect this week with the beginning of open enrollment and the opening of online insurance marketplaces. The new law is extremely complex and promises to raise health insurance costs for many, including myself, at least in the short term. Lots of people are complaining about it, some more savagely than others. Many of my colleagues and patients have bemoaned it, and with good reason. But there is one group who have not complained to me about it at all: my patients who do not have, and until now have not been able to afford, health insurance.

On forced procreation and the right not to be a father

Wednesday’s Chicago Tribune ran a story on the top of the front page: “Couple battle over frozen embryos.” It is a tale that has been told many times in many places, with slight variations in the details: woman finds she has cancer; chemotherapy will end her fertility; boyfriend donates “genetic material” and, using her eggs and IVF, they make embryos; boyfriend and girlfriend split up; now she wants to implant embryos, but he wants embryos destroyed; Illinois Supreme Court to weigh in.

The boyfriend claims that “he never agreed to give up a say in whether he becomes a parent, that forced procreation would violate his constitutional rights” (italics mine). The Tribune story quotes him as saying, “I have the right not to be a father.”

Whoa, wait a minute. Forced procreation? The way I read the story, nobody was holding a gun to his head when he made his donation.

Nobody is denying that he has a right not to be a father. But it seems to me that he relinquished that right the moment his “genetic material” met her egg, and made a third party, a separate embryonic human. In other words, it’s too late — He already is a father.

If there is a “right” not be a father, it is the right to avoid fatherhood by avoiding going around fertilizing ova, not the right to avoid fatherhood by killing one’s offspring.

 

Where end-of-life and beginning-of-life considerations collide

This month’s issue of Sexuality, Reproduction & Menopause, the journal of the American Society for Reproductive Medicine (ASRM), carries an article  entitled “’Last-chance kids’: A good deal for older parents – but what about the children?” The article discusses the growing number of older, post-menopausal women giving birth through assisted reproductive technology (ART), and gives a thoughtful analysis of the ethical points surrounding the use of assisted reproduction in women past childbearing age.

As my clinical ethics professor always said, good ethics begins with good facts. The authors of the article provide good, pertinent facts: data not just on life expectancy at various ages, but – just as important when considering the energy needed for parenting – actuarial data on how many of those years are likely to be spent in good or excellent health. (Should we use ART to give a child to a woman who statistically has very little chance of staying healthy enough to raise the child through high school?)

The article continues by asking, “Is reproduction a right?” Remarkably, instead of invoking the free-for-all autonomy that plagues attempts at ethical analysis of reproductive rights, the authors quote an ASRM Ethics Committee’s report that “Reproductive rights protected under the United States and state constitutions are rights against state interference, not rights to have physicians or the state provide requested services … It is also important to recognize that constitutional rights to reproduce are, like all rights, not absolute and they can be restricted or limited for good cause.” Refreshing, to say the least.

The authors continue with a surprisingly candid evaluation of the consequences for the children of these older parents. They conclude with strong cautions about the use of of ART in the elderly which, while falling short of prohibiting the practice, nonetheless give the overzealous practitioner of such techniques reason to pause and consider.

I can understand why a woman might desire to have a child in her older years. However, the inability to conceive a child in one’s 6th or 7th decade of life can hardly be regarded as a disease, and I cannot see any compelling reason why medical technology should be used to treat it. As Dr. R. Landau wrote, “Childlessness is a complex concept, and children are neither medicine nor therapy. They should not be used as means to other people’s ends.” (Quoted in the linked article.)

 

 

Eight is Enough

 

In response to a family’s having eight babies by IVF and gestational surrogacy:

“In this society, if you have money, you can have miracles!”

“Having children is now a luxurious game for the rich!”

“This completely topples the traditional meaning of parents.”

“From the sound of it, they just tried to have some kind of baby machine.”

“Gestational surrogacy is the business of renting out organs.”

“Why did they have to hire so many people to have babies for them? Did they think they had the right to bear children just because they were rich? Secondly, what respect to life did they show? Multiple pregnancies are super risky.”

These are reactions from the public, press, and government officials to a wealthy couple having two sets of triplets and one set of twins via IVF and two surrogates in China, where there has been an official one-child-per-family policy since 1978. Last month a southern Chinese newspaper broke the story of this family, and you can sense the angry reaction of their society in the quotes above.

(There is apparently a large surrogacy industry in China, despite a 2001 ban on Chinese hospitals doing the procedures. The manager of one surrogacy agency reports being overwhelmed with applications from aspiring surrogate mothers, most of whom are having emergencies and “need a large sum of money.”)

In the uproar, we can see erupting some of the tensions surrounding these technologies that are still somewhat under the surface in our own society: What about the divide between those who can and can’t afford reproductive technology? What does it mean to be a parent, especially where surrogacy is involved? Is surrogacy the commodification of women, the reduction of woman to womb?

There is a lot of worrying that China will catch up and surpass western economy and culture. It seems that in some areas they have already caught up with us: pushing the envelope of societal norms with the use of reproductive technologies, and the commodification of women in the process. In another area they are still far behind us: they have not yet lost the ability to be uncomfortable, shocked, even a little disgusted at the ethical implications of these technologies for families and society.

 

(Sources: Here and Here)

Privacy and the risks of IVF

A recent article in Toronto’s National Post tells of the experience of Dr. Rosanna Weksberg, a University of Toronto geneticist, when she presented a talk on the need to study risks associated with IVF (in vitro fertilization) to the Canadian Fertility and Andrology Society. Her talk related her experience in seeing an increased number of children with rare genetic disorders among children conceived by IVF. Some of those disorders are seen as much as 10 times more often in children born by IVF.

She expressed her concern that follow-up studies of children born by IVF are needed. The reception from the meeting of fertility specialists was polite, but no interest in her proposal for study was expressed. She said she has been trying to find fertility clinics willing to partner in studies of children born with the help of reproductive technology, but has not found any willing to work with her. A spokesman for the fertility society said they were interested, but that clinics could not afford to fund research.

In the United States assisted reproduction is a 3 billion dollar a year industry, but like in Canada there is no accurate information on the risk of genetic disorders, birth defects, or other increased health risks of the children produced by these procedures. Our culture has set apart everything having to do with sexuality and reproduction in a domain protected by privacy. That protection is so complete that it causes assisted reproductive technology to be entirely unregulated and makes any attempt to study the outcomes of the children produced exceedingly difficult. We need to recognize that, even though privacy in reproductive decisions is important, people cannot make responsible decisions without good information. Those contemplating the use of assisted reproductive technology need to know what the risks are for the children they bring into the world. They owe it to their children.

From IVF to human trafficking, and how liberal bioethics led the way (actually, it followed)

 

Ross Douthat of The New York Times wrote recently of The Failure of Liberal Bioethics to provide any ethical guidance in the area of reproductive technologies. He recounts how liberal bioethicists, for all their eloquence about monitoring and controlling new reproductive technologies, really just act as a rubber stamp for whatever anybody wants to do, finding reasons “to embrace each new technological leap while promising to resist the next one . . . You can always count on them to worry, often perceptively, about hypothetical evils, potential slips down the bioethical slope.  But they’re either ineffectual or accommodating once an evil actually arrives. Tomorrow, they always say — tomorrow, we’ll draw the line. But tomorrow never comes.”

This marked failure in line-drawing in years past is bearing grim fruit today. In the August 4th New England Journal of Medicine, George Annas wrote of Canadian legal efforts to regulate the international trade in reproductive medicine. In order to bypass local regulations and expenses, people buy sperm from one country, ova harvested from women in another country, and rent a woman to act as a gestational surrogate from a third country, to try to have a child. These are just the sort of practices against which “conservative” bioethicists, those concerned with human dignity, the meaning of procreation, and the commodification of children, have warned; and about which “liberal” bioethicists have opined, “Well, there’s a theoretical risk here, we’ll have to watch that —” and then watched as theory became practice and practice became madness. Annas writes of the fear of many that reproductive medicine is “becoming a branch of international trafficking in women and children.”

This fear is reality. Last winter the Wall Street Journal ran an article featuring PlanetHospital.com LLC, a California company that scours the globe to find the “components” for its “business line” of internationally trafficked reproductive materiel and technology. ”PlanetHospital’s most affordable package, the ‘India bundle,’ buys an egg donor, four embryo transfers into four separate surrogate mothers, room and board for the surrogate, and a car and driver for the parents-to-be when they travel to India to pick up the baby.” The international nature of this enterprise places it under the radar of any governmental regulation that might interfere with the “business line,” and there does not appear to be much internal ethical regulation on the part of the company itself; anything goes, even when an apparent pedophile wants to have a child. As chief executive of PlanetHospital Mr. Rupak says, “Our ethics are agnostic. How do you prevent a pedophile from having a baby? If they’re a pedophile then I will leave that to the U.S. government to decide, not me.”

If liberal bioethicists continue to have their way, the unthinkable practices of today will become the commonplaces of next week. Annas bears disquieting witness to this when he writes of ”acts that were once thought to be so universally condemned that prohibitions against them could be incorporated in an international treaty.  These prohibitions include the knowing creation of a human clone, the creation of an embryo from the cell of a human fetus or from another embryo, the maintenance of an embryo ex utero for more than 14 days after fertilization, the use of sex-selection techniques for a reason other than the diagnosis of a sex-linked disorder, the performance of germline genetic engineering, the use of nonhuman life forms with human gametes, the creation of chimeras for any purpose, and the creation of hybrids for reproduction.”

How many of these “acts that were once thought to be so universally condemned” are already standard procedure today? If liberal bioethics continues to have its way, which of today’s unthinkables will be the next California company’s “business line?”

 

(If you have time, read all three articles.  They are very disturbing. If you think that the work of CBHD is unimportant, you may just change your mind.)