Rejecting Birth Abnormalities

Marissa Leshnov for The New York Times

 

"The Times reviewed 17 patient and doctor brochures from eight of the testing companies, including Natera, Labcorp, Quest and smaller competitors. Ten of the brochures never mention that a false positive can happen. Only one mentioned how often each test gets positive results wrong."

"Genetic counselors who have dealt with false positives say some doctors may not understand how poorly the tests work. And even when caregivers do correctly interpret the information, patients may still be inclined to believe the confident-sounding results sheets."

The New York Times -- "When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong"

 

"It's a little like running mammograms on kids."

"The chance of breast  cancer is so low, so why are you doing it?"

"I think it's purely a marketing thing."

Mary Norton, obstetrician,l geneticist, University of California, San Francisco

 

"Despite the trend in delayed child-bearing and advanced maternal age at delivery in the last several decades rates of Down Syndrome in Canada have not increased proportionately."

"This is due to increased use of prenatal diagnostic procedures followed by termination of Down Syndrome pregnancies."

Public Health Canada

Illustration adapted from Genetic Counseling Aids, 7th Edition

Relaxed access to abortion in most societies along with prenatal testing for genetic abnormalities have resulted in expectant parents making choices over whether to continue a pregnancy to completion or to abort a foetus and try again. Down syndrome babies became a primary target, readily picked up by tests for its easy detection as a chromosomal anomaly. The thought of giving birth to a child who would be impaired in development and have special nurturing needs was singularly unattractive to prospective parents in a world where it is no longer a woman's place to give her undivided attention to her children.

 

Down syndrome screening has resulted in far fewer children growing into adulthood with the syndrome, sheltered by their families and living longer so that they outlive their parents' ability to continue their role shielding their offspring from the harsh realities of life for those unable to function as wholly independent adults, depending on the severity of the condition.  Iceland in 2017 had few such children with close to 100 percent aborted following confirmation at prenatal testing.

Although not to the same degree as Iceland, many other countries see a majority of Down syndrome pregnancies aborted. The abortion rate for Down syndrome in the United States stands at 67 percent and in France, 77 percent, while Denmark has a 98 percent abortion rate for Down syndrome pregnancies.

 

AFP

The New York Times published a feature on non-invasive prenatal testing (NIPT) on the first day of the year 2022 pointing out that non-invasive tests tend to be hugely inaccurate, up to 85 percent of faulty results. And many of those 'positive' results in findings of abnormality -- many of them for extremely rare syndromes -- indicating a troubled birth in the delivery of a baby that nature failed to endow adequately to allow it to mature normally would take place. Such tests may urge follow-up consultations leading to validation of results -- but many prospective parents simply accept the results rather than investigate them since these are costly procedures, opting to abort instead.

The story in the NYT approached non-invasive prenatal testing in the case of five abnormalities beyond Down syndrome, discovering huge numbers of false positive rates; 81 to 93 percent of tests rendering incorrect results. And while many doctors prescribe these tests for their patients there are some experts in the medical community who view them with the skepticism they feel they deserve; as having a financial incentive; yet another marketing tool.

As an example, the story reported one large test producer, Natera, had performed over 400,000 screenings for one abnormality in 2020 which would be the equivalent of testing approximately ten percent of pregnant women in the United States. The simplest of all tests is that to recognize and identify gender. It may not register as reasonable to abort in favour of one gender over another but in some cultures a preference for male babies is the pervasive norm.

Decades ago an article was published on the "100 million missing women", by Amartya Sen, shocking attention to focus on the common South-Asian practice of sex-selected abortion and infanticide. Since then, the world has risen above its initial shock, going on to increasingly rely on testing technology now in widespread use -- and its consequences. It is when testing is done and results in hugely incorrect, misleading results, influencing parents to abort when they may, in most instances, be carrying perfectly normal foetuses that a societal problem raises concerns.

An Overdue Life-and-Waste Discussion

"There's a middle group that, if there was anybody interested in organizing them, could probably mediate some of the stuff at the far ends of both spectrums."
"It wouldn't make everybody happy. But nobody is happy now, anyway."
"People on both sides of the issue are nervous about speaking about things that are ethically complex, because how will those things be used by people on the other side. Those of us who are pro-choice present pro-lifers as adamant -- 'no abortion for any reason, just let the woman die'. [Whereas pro-lifers think of pro-choice people believing abortion not the delivery room is entirely acceptable.] Neither of these things is true."
"There are reasons women have abortions, and if those reasons didn't exist, many of them would continue their pregnancies."
Frances Kissling, president, Center for Health, Ethics and Social Policy, Washington

"Outside of a fraction of the country, the abortion issue, on the whole, as a medical transaction, seems done."
"[The issue behind abortion acceptability presents] a quandary that now puts abortion in the realm of the assisted dying debate."
"We are past the stage of whether or not we should have the moral, ethical, legal and legislative right [to a doctor-assisted departure from this world]. On that issue, we're now into the weeds of deciding the final what and when. And that's comparatively where the abortion issue is now."
John Write, pollster, DART & Maru/Blue polling

"[There exists a lack of nuance in public debates on abortion] because of the kinds of questions too often asked in public polls on abortion. Questions that aren't meaningful to the lives of people most directly affected."
"[A minor with an unwanted pregnancy and unsupportive parents in parental consent can be asked an opinion and] one would likely get a very different answer than from a random poll."
"A meaningful question about abortion later in pregnancy would ask about the reasons why people seek and need abortion through pregnancy, and about the hardships endured, the resources required and the stigma suffered by many in accessing this care."
Joanna Erdman, associate professor, Schulich School of Law, Dalhousie University

New technologies are pushing the boundaries of “fetal viability,” and challenging our ideas about confronting us with discomforting questions about abortion.   Getty Images

Hospitals and clinics in Canada performed slightly over 85,000 abortions in 2018, according to the Canadian Institute for Health Information; a lower number than was done in 2017, at 94,000 when the abortion drug Mifegymiso was available in Canada, when women could abort in the privacy of their homes. The two-pill regimen can be prescribed within the first nine weeks of pregnancy, where a normal full-term is roughly 40 weeks.

A fetus cannot breathe outside its mother's body at 21 weeks; the tiny sacs called alveoli that fill with oxygen are not yet fully developed; premature lungs lack surfactant to keep the tiny air sacs from collapsing and sticking together when deflated. Yet the near future holds out the possibility that a fetus could be placed within an artificial womb, a translucent, plastic vessel filled with fluid mimicking the uterine environment. An oxygenator powered by fetal heartbeat,

In such a scenario an "extracorporeal" uterine device would nurture a viable human fetus enabling it to grow, bathed in artificial amniotic fluid until such time as the lungs, brain and other organs mature, technicians keeping watch while the sounds of a maternal heartbeat soothe the fetus. The greater majority of Canadians believe abortion should not be legal past the initiation of the third trimester of pregnancy -- 28 weeks onward.

There is a middle group identified by an extensive national survey of Canadians with more nuanced views on abortion than the committed pro-lifers and -choicers. A recently published DART & Maru/Blue poll found seven in ten Canadians think of the current situation on abortion, with no legal restrictions at any stage of pregnancy acceptable. Decades ago an earlier poll indicated that 44 percent of people surveyed believed abortion should be legal in some circumstances, with 32 percent saying when the woman wanted it, and 22 percent that it be prohibited unless the mother's life was in danger.

The current DART poll found one in ten considers abortion unacceptable; the majority -- 71 percent -- feel a woman should have access to an abortion once she decides she wants to have it, irrespective of reason. Yet a deeper issued revealed itself when the survey highlighted areas of ethical and moral debate where, though two-thirds (62 percent) of Canadians led by Quebec and British Columbia, identify primarily as pro-choice, and only one in ten as pro-life (led by Alberta, at 19 percent), one quarter of Canadians felt uncomfortable in either category.

Of those, three-quarters believe an abortion should be legal when evidence exists that the fetus may be mentally or physically impaired, while six in ten believe abortion should be legal if the woman or family is unable to raise the child affordably. Canadians believe almost unanimously (93 percent) that doctors should be lawfully required to inform women of potential risks of surgical abortion prior to the procedure. Over three-quarters favour a law that would require doctors to inform women about abortion alternatives, like adoption.

A law requiring women seeking abortion to wait 24 hours between counselling and committing to the procedure is favoured by two-thirds of respondents, while half believe a law should require women under 18 to have parental consent for an abortion, and seven in ten feel abortion should be illegal in the final three months of pregnancy. And while a dominant majority reject abortion outright for sex selection -- usually favouring males -- only 57 percent believe abortion should be legal in the second trimester.

As to the question whether government should debate the issue of abortion, three-quarters of respondents feel matters would best be left as they are, yet the status quo reflects that Canada is alone in the world with no legal boundaries on abortion even while half of Canadians feel politicians should at the very least be willing to discuss providing some regulatory framework. The extremes on both sides of the issue, points out Ms. Kissling, a pro-choice Catholic herself, control the politics in their entrenched warfare, paying no mind to moral complexities, reducing the debate to absolutist positions.

A team at Children’s Hospital of Philadelphia is developing a “Biobag,” or artificial womb-like device, to help keep babies born severely premature alive. Children’s Hospital of Philadelphia

A Medical Community in Moral Conflict

"[These findings are] a bit depressing."
"We have 66 residents a year in family medicine and a number of them come to me saying, 'I really want to become [an abortion] provider. Help me find somewhere to do the training'. And they can't get anywhere to do it."
"[Medical education now avoids abortion techniques, conservative/religious faculty members in fear of pressure] from a very small but vocal group of students that believes abortion is killing and we shouldn't be teaching it, we shouldn't be condoning it and we shouldn't be doing it."
"The [medical] schools have perhaps capitulated, or seen that it is better to just be a bit quiet about this."
Dr. Susan Phillips, professor, family medicine and public health sciences, Queen's University, Kingston, Ontario

"The majority of family medicine residents do not feel competent to provide abortion services."
"[Medical schools] should focus on normalizing [abortion training, while respecting the right to opt out]."
Survey study, journal BMC Medical Education

"We believe that if you make abortion something that is part of the scope of family medicine training, while respecting people's rights ... you remove a lot of the stigma and you make people more likely to get exposed."
"These are essential -- not 'niche' -- competencies. We need to have the current generation of family physicians graduating and being, at a minimum, able to counsel and speak with women on this topic."
Dr. Daniel Myran, family physician, Study lead author

Eighty per cent of respondents in Canada received less than one hour of formal education on abortion. Getty Images/iStockphoto

There are no legal restrictions on abortion in Canada. There are also no legal guidelines enacted into law with respect to abortion, although abortion is freely available throughout most of Canada with few exceptions. Most Canadians are in agreement that abortion availability represents a woman's right to choose whether she is prepared to carry a pregnancy to full term for any reason whatever. And among those in support of medical abortions many believe there should be a cut-off date commensurate with that time when a fetus passes the stage of viability.

An estimated one in three women in Canada will have an abortion at some point in her life. Family physicians perform the majority of pregnancy cessation procedures and only medical doctors are licensed to provide abortions (76 percent of the 86,824 reported abortions in 2014-15 were performed by family doctors). A new study has come to the conclusion that there is a shrinking pool of abortion providers willing to undertake the procedure. Leading to the obvious realization that there is a need for graduating physicians to replace them, with proper training.

Approximately one in three Canadian women will have an abortion in her lifetime.   Fotolia

The study reached out in a survey of family medicine residents throughout Canada. The researchers in studying the responses from family physicians ascertained that 88 percent of respondents were exposed to less than a single hour of formal education on abortion specifically during their medical training. This, while 79 percent had never during their medical training had the opportunity to observe or assist in an abortion procedure. Professor Phillips outlines a number of issues at play in this stepping back of acknowledging the need to ensure that graduating physicians are competent in abortion procedures.

She places responsibility for this serious deficit on what she points out is a new era of "accommodation -- putting accommodation of the individual learner or teacher ahead of publicly held values and standards". The Supreme Court of Canada in 1988 struck down what it ruled to be overly restrictive laws when it decriminalized abortion. Despite which, all these years later, barriers remain firmly in place, inclusive of a reaction by doctors in rural areas and some provinces due to "ongoing stigma toward abortion provisions", as the study authors point out.

Eight medical schools outside the Maritimes and Quebec aided in distributing an anonymous online survey produced by the researchers, reaching a wide audience of medical practitioners. Of the tens of thousands of doctors receiving the online survey, a total of 436 family medicine residents responded, 21 percent of whom reported having been exposed to one or more abortions during residency, while 57 percent claimed to have had no formal education on abortion whatever. Of the residents surveyed, 61 percent were in support of more abortion training to be available to residents.

The newly introduced drug Mifegymiso, an abortion pill, was made legal for prescription use in Canada last year, after the survey was conducted. The new drug can be prescribed up to nine weeks, "And it doesn't detract from the clear need for an approach to offering abortion training as a core aspect of family medicine", remarked Dr. Wendy Norman, a leading researcher in reproductive health at the University of British Columbia.

Abortion does not appear on the list of 99 priority topics to be taught established by the College of Family Physicians of Canada, the body responsible for setting training standards. The results of the survey, however, has led the College to re-examine its lack of recognition of abortion procedures as a must-have skill and is now prepared to look at "how to enhance abortion education in family medicine education programs in Canada."

Extreme Caution : Abortion Alert

"There is no evidence in any jurisdiction that women would seek and obtain a mifepristone prescription, yet not use it."
"This requirement [that a doctor witness a woman taking the first dose] is medically unnecessary and demeaning to Canadian women."
"The single most important reason physicians from across the country are citing for not planning to offer mifepristone is the need for physician dispensing."
"The physicians we have polled -- particularly rural physicians -- have no infrastructure for this."
Dr. Wendy Norman, sexual and reproduction health researcher, University of British Columbia

"[The requirements for dispensing the new anti-abortion drug will effectively limit its availability] and its potential to transform abortion access in Canada."
"The women who call us are looking for a safe way to terminate their pregnancy that doesn't require a lot of travel to an abortion provider, and doesn't require a surgical procedure to be performed on them."
Sandeep Prasad, executive director, Action Canada for Sexual Health and Rights

"We're really trying to balance the use of the product with the potential risks and any of the adverse events that could come from it."
"You want to make sure the person prescribed the medication is [the one] taking the medication. You don't want that medication to go to somebody else."
"You don't want someone to take it at a later time where the risks can be greater."
Dr. Supriya Sharma, senior medical adviser, Health Canada

Mifeprex, a brand name of mifepristone, is available in the United States. A similar product is currently being reviewed by Health Canada. Photo, courtesy of Danco Laboratories.

Mifepristone is regarded as the "gold standard" in medical use for early-stage abortions. France and China have given access to the drug for over a quarter of a century. The drug has been available to American women in the United States since 2000. It is only now that Canadian women can look forward to being able to access this drug that blocks the hormone progesterone, a drug whose efficacy is well recognized and which is available for use in over 50 countries.

When progesterone is blocked its normal function in the preparation of the uterus lining for a pregnancy is disrupted. The lining breaks down and it sheds, a process similar to that which occurs during a woman's menstrual period. Misoprostol acts to cause the uterus to contract, expelling the pregnancy, in the second stage of the drug.

Health Canada has responded to criticism from women's groups that its guidelines for use are unnecessarily complex. They point to a single case of ectopic pregnancy reported in the United States which resulted in the death of a woman taking mifepristone and misoprostol, as well as a few instances of blood infections, including fatal sepsis. A single case of a non-fatal heart attack was also attributed to the use of the abortifactant.

Whether or not there is an actual direct cause-and-effect relationship between these health crises and the use of Mifepristone, however, is unknown. But those in the medical community calling for greater options to be available to women feel Health Canada's restrictions are unhelpful. Dr. Norman and her colleagues recently published a study showing that abortion facilities are located in large urban centres only for most jurisdictions, with the exception of British Columbia and Quebec.

This is a two-step regimen which pairs one drug, mifepristone, with a second, misoprostol. Used within 49 days of pregnancy, the combination induces abortion that is patterned similarly to a natural miscarriage. The drug will not be available over the counter, only through a physician's prescription, and that doctor must be prepared to carry through to witnessing the first dose being taken by the women he has prescribed it for.

Along with that dedication to following a patient's progress with the abortion pill whose convenience of use is obviously made complicated by Health Canada's prescribed regimen, the doctor would be responsible for ordering, stocking and taking payment for the pills, a process that normally goes through a pharmacy as intermediary. The cost is expected to be $270 per package.

And doctors are expected to be registered after completion of a certified, online training program that will entitle them to prescribe and dispense the medication; with Health Canada's protocol requirements: "the patient will not have the prescription in [her] hands". For the physician, an unnecessarily cumbersome process, for the patient a prime indignity.

As it is, women will be required to undergo an  ultrasound to determine gestational age, and ruling out ectopic pregnancy before the abortion pill can be confidently prescribed with safety uppermost in mind.

Inventor of the RU486 abortion drug, French Professor Emile-Etienne Beaulieu, holds the pills in this 1995 file photo. The pills, which have been available in France for 25 years, have been approved for use in Canada.   REMY DE LA MAUVINIERE/Associated Press)

More Catholic Than the Pope

"It is the poorest women who are suffering from this crisis. It is not women in the upper-class neighbourhoods, who can protect themselves from mosquito bites."
"I haven't seen anything from the governments of these countries themselves [Latin America] that indicate they are reconsidering the restrictive laws because of this crisis. I haven't seen any of that."
"The only calls that have gone out from health ministers is 'Don't get pregnant', which is kind of an unrealistic demand I think, if contraception is not available for the poorest..."
"Of course men are responsible for having sex and getting women pregnant as well, but the reality is that men refuse to take this responsibility seriously. So women are the ones who get pregnant and they are the ones who are called upon to prevent getting pregnant."
Dr. Rebecca Gomperts, Dutch physician

Photo: Still from video

"Not only is increased access to abortion and abortifacients [abortion-inducing drugs] an illegitimate response to this crisis, but since it terminates the life of a child it is fundamentally not preventative."
Vatican statement

"[Unlike abortion], avoiding pregnancy is not an absolute evil [in certain circumstances it may be viewed as] the lesser evil."
"[However, abortion is never permitted, including foetuses with serious brain defects caused by the Zika virus as abortion is] a crime. It is killing one person to save another. It is what the mafia does … It is an absolute evil."
Pope Frances 

Photo: Still from news video

No woman considers the birth of a disabled child to represent a blessed event, not even when the Pope himself sanctifies such a birth giving it his personal blessing. Yet even he has compassion for the mother and the child who will be faced with a lifetime of sorrow in negotiating life's passages from such a hugely disadvantageous perspective. And so, he can personally and graciously overlook defiance of Church doctrine in the form of contraceptive for this singular situation, but never, no never, abortion, a cardinal sin.

An Internet-based helpline for women has lately been inundated with requests for help from desperate women, those who have access to computers (which rules out a lot of rural women living impoverished lives), speaking of their personal anguish, and reflecting the larger desperation of Brazil's demographic of child-bearing-aged women, as well as those across Latin America where the Zika virus is raising its grotesque head, leaving infants in its wake with uncharacteristically small heads and brains; microcephaly.

The Canada-based Women on Web providing advice and medications on request for women in need of abortion assistance haling from countries where abortion is banned, has been receiving increasing pleas for help through emails from women anxious to avoid giving birth to microcephalic babies. For those thousands of women who have already been shocked into insensibility by the reality that their newborns will face a life of uncertainty and discrimination, health misery and anguish, it is too late.

These women are begging for pills that are unavailable in Brazil, Colombia, Venezuela, Peru or El Salvador where laws against abortion procurement prevail. Abortions in El Salvador are not to be had for any reason, including rape and incest. Colombia will permit abortions if severe deformity is identified in a foetus. The organization meant to aid women constrained by law from release of bearing a malformed baby was founded in 2005 by Dutch physician Dr. Rebecca Gomperts.

Women on Web has been supplying packages of Mifepristone and Misoprostol around the globe for over a decide to women who have requested their assistance. But the numbers have taken a sharp uptick since the Zika crisis has developed. "We think [the increase in requests] is related to the Zika outbreak. We cannot explain it any other way. Probably a lot of women are looking for abortion services now", stated Dr. Gomperts.

Little wonder, when in their patriarchal society that adheres to the strictures of the Roman Catholic Church forbidding both contraception use and abortion, when the women are informed by their highest government authority that it is up to them to avoid pregnancy, a true 'catch-2' that victimizes women and punishes them for having to bear a burden whose outcome is circumstantial and not of their volition or wishes.

Dr. Henry Morgentaler, Rest In Peace

Dead at 90 years of age. Years well lived in a determined battle to confront an ill he saw before him, and unrelentingly unwilling to allow himself to falter, though he paid a considerable price. When Dr. Morgentaler challenged Canada's anti-abortion laws he was derided, slandered, arrested, and incarcerated. But his pursuit of justice for half of the country's residents led him to persevere.

No one else with the authority of an outspoken, resolute medical practitioner bothered to champion the right of women to choose when and under what conditions they would bear a child.

"I decided to break the law to provide a necessary medical service because women were dying at the hands of butchers and incompetent quacks, and there was no one there to help them. The law was barbarous, cruel and unjust. I had been in a concentration camp and I knew what suffering was. If I can ease suffering, I feel perfectly justified in doing so."

"If I should die tomorrow, I could say I have accomplished something with my life. The fact that some people are opposed to abortion on religious grounds doesn't bother me as long as they are not allowed to influence other people by force or by other means. The situation in Canada is much better than in most other countries in the sense that abortion is practised by good physicians under good conditions. I believe as a medical doctor my duty was to help humans, and I did it."

His critics, vociferous with rage against this man, made comparisons to what he was doing, freeing women from the burden and pain of carrying a foetus when they had no wish to bear a child, to the abhorrently ghastly medical experimentation done by Nazi Germany's Josef Mengele. Hysterical condemnation of abortion likened it to a 'holocaust' of the innocent unborn.

These are easy enough charges to toss about; people having no idea what the Holocaust accomplished in beggaring the world of millions of Jews whose numbers have never since recovered. These were living, breathing human beings of all ages. They were not 'unborn children', on the cusp of being.

They existed as full-fledged, thinking, feeling human beings and then those lives vanished in a voluminous cloud of ash darkening the sky in a paroxysm of triumphalist genocide.

If anyone wanted to know what deprivation and horror, fear and carnage really resembled, they could ask Dr. Morgentaler, for he was very familiar with desolation, loss and anguish. And he had no wish to inflict it upon others. His wish was to remove the potential for all of that from the lives of women.

And he succeeded. At least in Canada, he did. For the most part, since there are still pockets of resistance to women's most basic entitlements -- withholding that right of abortion.

When Dr. Morgentaler opened the country's first free-standing abortion clinic at 2990 Honore-Beaugrand Street in east-end Montreal, abortion was illegal; punishable by the law in a most dramatic fashion. Anyone convicted of performing an abortion for any reason other than that the pregnancy endangered the life of the mother -- to which a panel of doctors at an accredited hospital would have to agree -- could be jailed for life.

It was also the time that selling or advertising any kind of contraception was illegal, even within pharmacies, and doing so could lead to a jail term.

"I have a vision, a dream that all people should be treated in a humane, compassionate way", Dr. Morgentaler declared, paraphrasing Dr. Martin Luther King's 1963 declaration of human rights entitlements, as he opened that Montreal clinic in 1970. That same year he was arrested, charged with two counts of performing illegal abortions.

He would be arrested and acquitted by juries on a number of occasions. In 1974 his jury acquittal was overturned by the Quebec Court of Appeal, and he was imprisoned for a ten-month period, until another government came to power and released him bowing to the will of the majority in an unspoken social covenant.

TOBIN GRIMSHAW, THE OTTAWA CITIZEN    Dr. Henry Morgentaler greets the crowd before being awarded with a lifetime achievement award from PPO and the Pro-Choice Canada Coalition, part of the National Day of Action for Choice on Elgin st. Sunday April 25, 2004. 

In 1988 the Supreme Court of Canada struck down Canada's abortion law as unconstitutional. Later, the Progressive Conservative government of Brian Mulroney attempted to introduce Bill C-43, permitting abortions in the case of a woman's proven mental, physical or psychological health being affected by carrying a foetus to term. Both patient and doctor could face prison if such conditions were not met under the law.

In an instance where the Chamber of Sober Second Thought performed its duty to the country and its citizens, the Senate of Canada defeated the bill that had been passed in the House of Commons.