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Archive for the ‘Biomedical Ethics’ Category

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In our long stride toward the inevitable designer babies, the first manipulation has been the noble goal of creating babies free of the mitochondrial diseases carried by their mothers. This series will examine the issue rather thoroughly in four basic segments:

1. The basic cell biology involved.
2. The problem of defective mitochondria.
3. The technique involving three-parent embryo creation.
4. The current state of the ethics debate among governmental bodies here and in the United Kingdom.

Cell Biology

In order to understand the fullness of the debate, we need to understand some very basic facts about cells. Every human cell contains specialized compartments called Organelles (meaning, Little Organs). Just as the human body has organs for specialized function (heart, lungs, stomach, intestines, brain, liver, kidneys, etc.) so too every cell has little organs for specialized function:

Ribosomes make protein.
Nucleus houses the Chromosomal DNA.
Lysosomes do recycling of worn out parts.
Golgi Bodies modify and ship proteins to appropriate destinations
Endoplasmic Reticula make lipids and are sites of protein synthesis.

and then come the Mitochondria.

The mitochondria are frequently referred to as the powerhouse of the cell, because they take in by-products of glucose and extract large amounts of energy for use by the cell. It takes a great deal of energy for cells to function properly, and the mitochondrion is the place where that happens. That having been said, it is one of the gross oversimplifications in biological education to leave it at energy production and move on where the mitochondrion is concerned. In fact, there are two scientific journals devoted entirely to mitochondrial research that immediately come to mind: Mitochondrion, and Mitochondrial Research. Suffice it to say that the scope of the mitochondrion and its effects on human physiology are broad and complicated.

For purposes of understanding three-parent embryo creation it helps to know the following. It is thought in evolutionary biology that at one time the mitochondrion was a free-standing, free-living cell that became incorporated into larger cells, with the result being a marriage that worked for both. It’s called the Endosymbiont Theory. Mitochondria replicate themselves within cells, so when cells divide, each new cell gets an appropriate number of mitochondria. In this way, the mitochondria act somewhat as independent organisms would. Along the way, most of the mitochondrion’s 3,000 genes ended up being transferred to the cell nucleus. The following description comes from the United Mitochondrial Disease Foundation website. I have found them to be an excellent clearinghouse of information with writing that is very easy for the scientific layperson to follow:

The conventional teaching in biology and medicine is that mitochondria function only as “energy factories” for the cell. This over-simplification is a mistake which has slowed our progress toward understanding the biology underlying mitochondrial disease. It takes about 3000 genes to make a mitochondrion. Mitochondrial DNA encodes just 37 of these genes; the remaining genes are encoded in the cell nucleus and the resultant proteins are transported to the mitochondria. Only about 3% of the genes necessary to make a mitochondrion (100 of the 3000) are allocated for making ATP. More than 95% (2900 of 3000) are involved with other functions tied to the specialized duties of the differentiated cell in which it resides. These duties change as we develop from embryo to adult, and our tissues grow, mature, and adapt to the postnatal environment. These other, non-ATP-related functions are intimately involved with most of the major metabolic pathways used by a cell to build, break down, and recycle its molecular building blocks. Cells cannot even make the RNA and DNA they need to grow and function without mitochondria. The building blocks of RNA and DNA are purines and pyrimidines. Mitochondria contain the rate-limiting enzymes for pyrimidine biosynthesis (dihydroorotate dehydrogenase) and heme synthesis (d-amino levulinic acid synthetase) required to make hemoglobin [Note by G.N.: This is the molecule that binds oxygen in every red blood cell]. In the liver, mitochondria are specialized to detoxify ammonia in the urea cycle. Mitochondria are also required for cholesterol metabolism, for estrogen and testosterone synthesis, for neurotransmitter metabolism, and for free radical production and detoxification. They do all this in addition to breaking down (oxidizing) the fat, protein, and carbohydrates we eat and drink.

Do visit their website for specific information on the range of mitochondrial diseases.

Now, without frightening off the non-scientist or non-medical person, the above quote cracks the door ajar ever so slightly to allow a glimpse of the complexities involved at the biological level. Adding further, there needs to be coordination between the genes encoded on mitochondrial DNA (mtDNA) and the mitochondrial genes encoded on the DNA in the nucleus of the cell (nDNA). To date, there are still too many unknowns in the cell biology and the pathophysiology at the cellular level (That’s why the journals devoted to mitochondrial research are going strong, and will be for years to come.). We don’t know all of the coordinated function between mtDNA and nDNA within a given individual, and what other factors there may be (as yet unknown) that govern such function. In other words, are all mitochondrial defects solely attributable to mitochondrial genes (mt DNA and nDNA), or are there other genetic/biochemical defects in the individual at play here? It matters when someone wishes to take the mitochondria from an egg cell, leaving the nDNA intact, and introducing mitochondria from another individual. It matters because the issues are not always so simple as mutations in genes.

Indeed there are other factors around the major genetic factors, and these are known as epigenetic factors. Epigenetics looks at factors involved in the regulation of genes, and when they get turned on and off. Adding still further to the complexity, there may be epigenetic factors in the nDNA that are unknown and alter the epigenetics of the mtDNA., and all of these factors in one kind of cell may well influence mitochondrial function in distant types of cells within the body.

Confused and bewildered yet?

That’s the point. We don’t know what we don’t know, and in mitochondrial disease there is quite a bit that we don’t know. It will be fertile ground for research for decades to come, and that points toward the abomination of three-parent embryo creation in human beings as a vast and unregulated medical experiment. In the next post (Nov. 20, 2014), we’ll look at several mitochondrial diseases and consider what we do know of their etiology, and what we suspect we don’t yet know. Then in the third post we’ll consider the technique involving three-parent embryo creation and consider the ethical dimensions involved.
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Photo Credit: Photo Via http://www.dailymail.co.uk/sciencetech/article-2838705/Three-parent-babies-unsafe-warns-scientist-Adviser-issue-says-unresolved-safety-concerns-years-testing-required.html

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terrischiavo-273x275

Every now and then the biomedical community and the legal system are presented with the opportunity to rediscover our collective humanity through the lens of animal rights and animal cruelty. More often than not that lens has insufficient power to correct their distorted perception of human dignity. Having just passed the ninth anniversary of Terri Schiavo’s death by starvation and dehydration, word comes today of the starvation and dehydration death of Roxy the dog, a boxer in England, who died at the hands of his solicitor-in-training owner, Katy Gammon.

Ms. Gammon has been in the employ of a law firm specializing in……

Medical Negligence.

It seems that Ms. Gammon retained Roxy who originally belonged to a boyfriend after the relationship ended. The dog was kept locked in the kitchen because it wasn’t housebroken. All was well until Gammon began staying with her mother a few blocks away and stopped coming to feed the dog after she injured her knee. A window into the collective soul from MailOnline:

Bristol Magistrates’ Court had previously heard that Gammon had confined the dog by tying a rope to the kitchen door handle and fixing it to a hook in the hall.

Roxy had frantically clawed at the door, leaving fragments on the floor, as she tried to escape before her death, which would have taken around six days…

Asked if she had deliberately locked her in the kitchen and left her to die, Gammon replied: ‘Yes, basically.’

The article continues with a description of what Roxy’s death was probably like. At this juncture it is worth noting that humans and dogs have very similar anatomy and physiology, and that dog experimentation has often been the last step before human trials of new medicines and medical treatments, because of our shared similarities. More from the article:

A vet said the pet would have taken up to six days to die gradually and painfully, becoming blind and falling into a coma before passing away…

‘A number of items had desperately been pulled out of cupboards. We believe this was a desperate attempt at searching for food or water.

‘Roxy suffered a slow, painful death which could have been prevented.’

And so it goes with human beings who are deprived of food and hydration as a means of hastening death. It is a slow and agonizing demise, as Roxy’s story indicates. Often the patient is unresponsive, but as the parent of any teenager knows, lack of responsiveness does not indicate a lack of sensory reception, or internal processing. Terri Schiavo was perhaps the most publicized case of the Roxys of our species.

However, shared physiology is where our paths diverge. Lower animals now possess greater dignity (from the Latin, meaning “standing”) in western jurisprudence than human beings. Consider the words of the sentencing magistrate as Gammon received 18 weeks in jail, and a lifetime ban on owning pets, for her crime:

Sentencing, magistrate Rod Mayall said: ‘You have shown limited remorse. You failed to behave as any normal person would have. This is the most serious case of animal cruelty encountered in these courts.’

And here is where the magistrate misses the mark by a mile. Humans are also animals. Additionally, we are a higher order animal, capable of at least as much pain (physical state) as a dog, and perhaps even more suffering (a psychological state). If this is the worst case of animal cruelty he has seen before the court, then it is because humans have lost their standing in the very courts they have created. Gammon has been sentenced to jail and a lifetime ban from owning pets so that she may never again be in a position to practice such barbarism. That’s a good thing.

However human beings who, on a daily basis, pull members of their own species apart, limb-by-limb, in the womb, and who similarly starve and dehydrate members of our own species to death do so with government-issued licenses and are considered practitioners in good standing.

The outrage in all of this isn’t that Gammon was punished for her crime against Roxy, it’s that the deaths of the Terri Schiavo’s among us aren’t considered criminal at all. It is that our legislators and judges do not, “behave as any normal person would have,” protecting humans with the same ferocity as they would if the subject in consideration were a dog.

The greatest tragedy of all is that humans have a long way to go before we enjoy equal dignity, equal standing with our pets in a court of law.

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desk

Wesley J. Smith has a disturbing article dealing with Oxford bioethicist Julian Savulescu’s proposal to screen human embryos for intelligence. Smith quotes Savulescu:

A common objection is that being smarter does not make your life better. In this study, researchers were concerned with those with an IQ between 70-85. Below 70 is classified as intellectual disability but an IQ of 70 to 75 is similar to mild intellectual disability.

Even for individuals with an IQ between 75 and 90 there are still significant disadvantages. Job opportunities tend to be the least desirable and least financially rewarding, requiring significant oversight…Individuals with this lower level of intelligence are at significant risk of living in poverty (16%), being a chronic welfare dependent (17%) and are much more likely to drop out of school (35%) compared to individuals with average intelligence.

Studies show that there is also an increased risk of incarceration and being murdered.

Read it all.

When it comes to eugenics, there is simply no end to the killing until a just people rises up and either kills or incarcerates the practitioners, as was the case with Nazi Germany. When forced sterilizations weren’t enough, there were detention camps, which gave way to concentration camps where people were shot and buried. When that proved too slow and cumbersome to effect the eugenic goal, gas chambers were built, with exhaust fumes from tanks pumped in. When that proved still too slow, larger chambers using cyanide gas were built, and ovens to cremate the remains.

Eugenics has a malignant mania that increases with demonic furor the further in one goes. When we go from preventing birth to active killing, a point of no return is reached and the killing can only be brought to an end by brute force. Consider Savulescu’s argument.

He begins with screening embryos for genetic signposts pointing to potential cognitive capacity. He justifies the killing by pointing to undesirable outcomes such as poverty, welfare dependence and dropping out of school, ignoring that the risks are all very low. Poverty, welfare dependence, and being a school dropout are reason enough in Savulescu’s cramped worldview to kill those who might end up there. By that logic, why should we tolerate those who do end up there? Ought we not have camps for such “human weeds,” as Margaret Sanger called them? And what happens when we tire of supporting the camps?

There are certain cardinal virtues that go with being a Ph.D. My life’s mentor, Father Luke McCann, Ph.D., once told me that those cardinal virtues are contained in the three little letters of the title:

Prudence.

Humility.

Decorum.

I would submit that Savulescu and his fellow travelers are bereft of all three. They are also bereft of the very intelligence they stake such a claim to possessing, as intelligence goes beyond capacity for factual recall, but involves the capacity for problem solving. Advanced intelligence goes beyond mere problem solving and involves the capacity for vision guided by empathy and moral principle. Ph.D.’s are not awarded our degrees for merely taking classes and passing tests. We are awarded the degree for making novel discoveries, for advancing the knowledge within our field of endeavor. In other words, one must demonstrate vision and match the vision with corresponding accomplishment. So where does Savulescu and his cohort get it wrong?

PRUDENCE

Their vision becomes constricted and they lose perspective on life. Intellect for its own sake becomes the pursuit, and they can’t tolerate the aboriginals spoiling their view of an idealized landscape. It becomes easier to kill the marginalized than to create systems that incorporate them more fully into society. How academia has fallen.

There have been several movements in psychology and medicine to give more humane treatment to the “insane.” Forward thinking physicians tried “Moral Therapy” as it was known, where patients were no longer locked in asylums that resembled dungeons. Instead, they were housed in the country and visited regularly by the physician who would bring a small cake, or other gift. In the 1970’s, the warehousing of the mentally retarded ended, and the Group Home movement began, a modern reincarnation of moral therapy. To society’s surprise we learned that “retards” could actually be taught and gainfully employed. So successful has this been that the terms “mentally retarded” and “retard” are uttered today only by boors. People enhanced with an extra chromosome are now graduating from college!

The community of parents with children who have autism are similarly on the march. Marginalization only happens when ignorance and fear trump reason and compassion.

HUMILITY

The jobs that exist on the margins are only marginal to pompous, effete academics. A closer look reveals the central importance of the work that the lowest-paid workers perform. Taking deliveries and stocking shelves in stores is vital work for those who do not produce their own food. So too for cashiers and maintenance workers, cleaning crews, and kitchen staff. They are the unsung and thankless jobs that make civilization civilized. When Martin Luther King Jr. called for blacks to stay at home and not go to work, whites got a good taste of how indispensable those they disdained truly are.

The rarefied air of universities often induces a case of intellectual and spiritual anoxia in those who never darken the chapel door. Savulescus are the result.

DECORUM

Savulescu above all should know that doctors are not free, but constrained. There are simply some groups that one never, ever goes after. If the privileges of the faculty club are the perks for years spent in advanced study and intellectual pursuits, then the unspoken rule is that one NEVER goes after others of unequal academic accomplishment because of their unequal accomplishment. This is especially true for those of unequal capability. There was a time when Savulescu would have been shunned by the academic community for doing so.

One of my professors in graduate school once told me that the Ph.D. is no big deal. “It’s a union card, Gerry. Nothing more. If you want to do this work, you need the union card. The big deal is your publication list at your retirement party.” How very true. It isn’t the degree, but what one does with it that counts.

Oxford now has some soul-searching to do. Do they tolerate a Savulescu in their midst under the soiled banner of “Academic Freedom?” Do they show him the door? If we are to salvage a crumbling western civilization, then the formation of our young in universities and colleges will need to be done by Ph.D.’s who understand and live the three cardinal virtues of academics:

Prudence, Humility, Decorum.

Absent brute military force, that’s the only non-violent response to eugenics.

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caduceus

This letter is addressed to every physician, scientist, and genetic counselor who believes in a eugenic agenda that targets the unborn specifically because of diagnosed genetic anomalies. It asks a series of penetrating questions that invite thoughtful response, and are not meant to be rhetorical.

The first question is: WHO?

Who taught you in medical school or graduate school that we doctors of science and medicine are the custodians of the human gene pool? Who was it that told you it was your job to keep that pool “clean?” They are serious questions, as I never encountered this philosophy, let alone mandate, in my premed studies at Columbia University, grad studies at St. John’s University, or post-doctoral studies at the City University of New York. Neither in the Ivies, Catholic, or Public universities did I ever encounter this mandate that has seized hold in our hospitals. Whence comes this thinking?

In my undergraduate studies in the 70’s and 80’s liberal arts professors taught extensively about the corruption of the Third Reich, and the eugenic agenda in Hitler’s camps. What we were never taught was that this agenda predated Hitler and arose within the medical community of the 1920’s in Germany. Regardless, the properly educated man or woman in American universities in the 70’s and 80’s was taught that eugenics was repugnant, Master Race and all of that stuff… It leads to the next question:

HOW?

How have we progressed from that understanding to where we are today? How is it that we have come to view genetic anomalies as so terrifyingly painful that those who bear them are deemed “incompatible with life,” which is strikingly similar to Hitler’s, “Life unworthy of Life?” On what basis do you make such an assessment, especially in the case of Down Syndrome? Is this rooted in firsthand clinical experience? It can’t be, as these children and adults are some of the most beautiful and happy individuals among us. How is it that we celebrate “diversity’ with near-fanaticism in society while we shoot for genetic homogeneity with similar near-fanaticism? That of course leads to the question:

WHAT?

What is it that you believe you have been entrusted with that leads to this neo-eugenics? When I went to graduate school, we were entrusted with great knowledge of biology across the spectrum of life, and in my course of studies, great knowledge of human and microbial physiology. We were entrusted with the knowledge and training in molecular biology, techniques so powerful that they have equal ability to destroy life on earth as well as advance the cause for life on earth. What we did not receive enough of was training in ethics, and not the sort of algorithm flow chart-based policy crap devoid of any training in metaphysics and human anthropology. I received all of that in undergrad, thank God. It was expected of us that we would use this great knowledge and power only for good, but therein lies the problem.

How do we define the good? Who defines the good? What is the good?

It’s easy for those of us who were obviously born with all of the genetic capability to earn doctorates to look down upon the disenfranchised with disdain. It comes from an insecurity within that says, “I can’t imagine living like that,” which is precisely the soil in which a eugenic mentality takes root. A little guilt added in to spice up the toxic brew, and here we are. But ask yourself this question.

If you rise above the genetics and epigenetics and consider the quality of life to which you appeal in your headlong pursuit of stamping out the unfit, what training do you have in anthropology, psychology, sociology, comparative religion, transcultural psychology, aesthetics, philosophy? How well did you apply yourself to these studies when you were in pre-med, or were these the B.S. courses you needed to endure on the way to medical or graduate school?

I would submit that most physicians and scientists I have met who are pro-choice are severely deficient in these areas, and as such cannot render an informed opinion as regards quality of life, and only speak from their very narrow and cramped worldview.

The new colonialism.

Of course, this all begs the further question:

When?

When was it that we stopped looking for cures and enhanced therapies, and started taking the cheap way out? When did death and non-existence become the answer, rather than healing and wholeness? When did we receive a mandate to kill every baby we could in order to aid the patient in avoidance of suffering?

I would submit that the answers reside in the radicalization of the liberal arts over the past thirty years, and in the watering down of the college curriculum in that time. It’s a formation issue, from my perspective, one that has left many of our finest and brightest physicians and scientists impoverished and without the necessary spiritual and intellectual protections against the power of our biotechnology to twist and distort its practitioners.

Do you disagree?

I’m open to feedback and answers to the questions

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stethoscopeHeart

News today that Belgium has approved euthanasia for any age. From BBC:

Parliament in Belgium has passed a bill allowing euthanasia for terminally ill children without any age limit, by 86 votes to 44, with 12 abstentions.

When, as expected, the bill is signed by the king, Belgium will become the first country in the world to remove any age limit on the practice.

It may be requested by terminally ill children who are in great pain and also have parental consent.

Opponents argue children cannot make such a difficult decision.

It is 12 years since Belgium legalised euthanasia for adults.

In the Netherlands, Belgium’s northern neighbour, euthanasia is legal for children over the age of 12, if there is parental consent.

Under the Dutch conditions, a patient’s request for euthanasia can be fulfilled by a doctor if the request is “voluntary and well-considered” and the patient is suffering unbearably, with no prospect of improvement.

Today the Belgian people have ratified civilizational suicide. There is no turning back now, absent a national awakening through evangelization. There is so much wrong with this law that it hardly bears discussion. It is simply malevolent, and it brings me back to an experience of when Regina and I were engaged to be married.

It was 1990-1991 and Regina was still a new Pediatric Nurse at Cornell Medical Center in NYC. One of her patients (We’ll change his name and call him Daniel) was a young boy who was six years old and being treated for leukemia. This little charmer stole my fiancé’s affections, along with those of the entire nursing staff. The stories of Daniel’s antics were hilarious and non-stop. Against the backdrop of the hilarity was the constant encroachment of a disease that had a short-lived remission.

There came a point when “the trip” was brought up in regards to the timing of the leukemia’s progression; the trip to Disney for this little prince. Off went the family and an excited little boy who had never been to Disney World.

It was magical for him.

Pure joy.

For mom and dad, it was the unique blend of joy and dread experienced by so many parents of critically ill children. Back home, Regina steadied her young girl’s heart for the switch from heroic last-ditch efforts in oncology to palliative care not only for Daniel, but for his parents, who by now seemed like extended relatives. When the end came, it came hard and fast.

There was never an issue of unbearable suffering for little Daniel. His pain was adequately managed. I was at Regina’s apartment in hospital housing on that Sunday afternoon when the day-shift nurse called with the news. Daniel had slipped away peacefully and Regina needed to come over. Regina had a good cry and asked me to go with her. When we arrived, Daniel was there in his bed, surrounded by grieving family, nurses, and physicians. His father sat next to his dead son, encapsulated in a bubble of grief that was impenetrable. It was there that I finally met this extended family.

Daniel’s mother hugged Regina and the two just cried. She thanked her over and over for all of her kindness as his night nurse, for the loving way in which she cared for Daniel, and for all of the emotional and logistical support that Regina gave that went way over and above the requirements of her job.

I stood there in support but mostly a spectator to this beautiful, if heartrending, scene. There before me were some of the finest minds in medicine and nursing in the world, in an Ivy-League teaching hospital, in fast-paced and cynical New York City, and they cried, laughed, and loved unashamedly. To the very last moment of Daniel’s brief life among us, they lavished their finest clinical ministrations upon him, and supplemented that with generous amounts of love.

Children such as Daniel simply do not think about suicide. They are hard-wired for hope in the future. In Regina’s quarter of a century as a pediatric nurse, never once has she come across a terminally ill child who ever wanted to end it all, who ever thought in those categories. That is a category introduced by the adults in their lives. The permanence of death simply escapes children.

There is only one antidote for the Belgian experience, and it revealed itself to me through my young fiancé and her colleagues a long time ago. At the wake and funeral it was a celebration of love, and the entire staff turned out in force for the family and for each other. A month later, Regina received a video from Daniel’s family asking that she remember him. His prayer card remains on Regina’s dresser to this day. A few times through the years, I have taken out that video and watched, and remembered, and learned.

It’s all about the courage that comes from love. That courage propels us to advance the field of palliative medicine, while allowing families to work through their bitter sorrow without succumbing to despair.

In that private room so long ago, it was evident that death came like a silent thief amidst an enormity of love. Daniel didn’t die at the hands of Regina and her colleagues. He lived at their hands, and more fully and beautifully because of their love and the love of his family. And when it was all said and done, his parents took up the rest of their lives having been lovingly supported and affirmed by a staff of professionals who honored the love that begat the little prince who stole my fiancé’s heart.

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lost-babies

It is well-known that women who receive so-called poor prenatal diagnoses are pressured by genetic counselors and obstetricians to abort the baby. Often, as in the case of Down syndrome, the diagnosis comes with just a week or two left before the legal limit to have an abortion. In the midst of the shock and bewilderment, the feelings of inadequacy in the face of certain special needs (Feelings which are completely normal), often comes severe coercion by physicians who will refuse to treat unless an abortion is obtained. Mothers and fathers are asked why they would make their child suffer. Family and babies’ fathers threaten physical, financial, and emotional abandonment.

With Down syndrome over 90% of babies are aborted within this crucible.

I have heard first-hand accounts that are horrid, accounts where the truth of therapeutic options for prenatal surgeries, post-partum surgeries and therapies often make for very functional children. Even when such is not the option, there is hardly ever a referral to a support group for a different perspective.

Then there are the frequent horror stories of the baby aborted and found to have been perfectly healthy and normal. Modern medicine is on a eugenic rampage and the stories of these mothers and fathers need to be told.

Therefore, I am beginning a project to collect the stories of parents who have been victims of abusive physicians and genetic counselors, whether they aborted or carried the child to term. Both the triumph and tragedy need to be told. Names will be kept anonymous and stories will be printed only by permission and in the parents’ own words in an upcoming book. Please reach out to anyone you know with such a story, and then email me at:

gerardnadal60@gmail.com

All names will be kept strictly confidential, and only those stories will be published where written authorization to do so has been obtained.

Feel free to contact me with any and all questions.

God Bless.

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Just in case anyone doubts that the objective is to destroy all private health insurance, this video has Obama in his own words. It’s devastating.

When the government tries to control our very bodily autonomy, it’s time to change course. The midterm elections are a year away. God help us all.

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