TAG | Bio-ethics
A few months ago, after a fertility procedure at a Mexican clinic, a healthy baby boy was born in New York to a couple from Jordan. It was the first live birth of a child who has been called — to the dismay of scientists who say the term is grossly misleading — a three-parent baby.
“This is huge,” said Dr. Richard J. Paulson, president-elect of the American Society for Reproductive Medicine, after the birth was reported on Tuesday.
The method used to help the couple is one that reproductive scientists have been itching to try, but it is enormously controversial because it uses genetic material from a donor in addition to that of the couple trying to conceive. The purpose is to overcome flaws in a parent’s mitochondria that can cause grave illnesses in babies.
And why exactly should this helpful procedure be ‘enormously controversial’?
Part of the answer lies in that term ‘three-parent baby’, rightly described as grossly misleading.
The New York Times:
Mitochondria, the cell’s energy factories, are separate from the DNA that determines a child’s inherited traits. But mutations in these little organelles can be devastating, resulting in fatal diseases involving the nerves, muscles, brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems that often kill babies in the first few years of life.
The technique that led to the healthy birth was to move the DNA from an egg of the mother, who had mutated mitochondria, and place it in the egg of a healthy egg donor — after first removing the healthy donor’s nuclear DNA from her egg cell. Then that egg, with its healthy mitochondria and the mother’s DNA, could be fertilized….
A small number of children each year are born with faults in their mitochondrial DNA which can cause diseases. Mitochondria are small structures that sit inside our cells and provide them with energy. They have their own set of 37 genes which are separate from the 20,000 or so genes that shape who we are.
… On a genetic level, all of the 20,000 genes on the child’s 23 pairs of chromosomes come from the child’s mother and father. The donor only contributes DNA that sit in the mitochondria, less than 0.2% of the total.
The New York Times:
“Mitochondria,” Dr. Paulson said, “do not define who you are.” The genes for traits that make up a person’s appearance and other characteristics are carried in the nuclear DNA. If a white woman got mitochondria from an Asian woman, for example, her babies would be white, with no traces of the Asian mitochondrial donor. The ban, said Dr. Paulson, “is not scientific, not rational, not evidence-based.”
The Catholic church opposes one form of mitochondrial transfer, called pronuclear transfer, because a fertilised egg from the mother is destroyed in the process. Catholic ethicists have also complained that mitochondrial transfer introduces a “rupture” between mother and father and “dilutes parenthood”.
Roman Catholic objections to that first form of mitochondrial transfer are consistent with that church’s opposition to abortion, and in that sense are understandable.
But there is a second method, called mitochondrial spindle transfer (MST).
The Guardian explains:
In this, doctors use standard IVF procedures to collect eggs from the mother. They take the nucleus from one of the eggs and drop it into a healthy donor egg that has had its own nucleus removed. The reconstituted egg contains all the normal genes from the mother, but her faulty mitochondria are replaced by those from the healthy donor. The egg is then fertilised with the father’s sperm. The resulting embryo has the usual 23 pairs of chromosomes that hold the mother and father’s DNA, but the 37 mitochondrial genes, about 0.2% of the total, come from a third person, the donor.
So no fertilized egg is destroyed.
Problem! Enter those ‘Catholic ethicists’ talking about a “rupture” between mother and child as grounds for objecting to all types of mitochondrial transfer. Their evidence for this ‘rupture’ is what exactly?
Let’s not forget that this is a church that, when it’s not opining on the scientific basis for exorcism, is also a church that claims to be a scientific authority on climate change.
It is also a church that likes to proclaim its compassion.
Mitochondrial diseases tend to strike in childhood and get steadily worse. They often prove fatal before adulthood. The parts of the body that need most energy are worst affected: the brain, muscles, heart and liver. Conditions include Leigh’s disease, progressive infantile poliodystrophy and Barth syndrome. Faulty mitochondria have also been linked to more common medical problems, including Parkinson’s, deafness, failing eyesight, epilepsy and diabetes…There are no cures for mitochondrial disorders.
The New York Times:
When Dr. Zhang [the doctor who led the team that carried out the procedure] told the Jordanian couple about the technique, they hesitated. They already had a child who was terribly ill with Leigh syndrome, a mitochondrial disease, but there was a chance they could have a normal baby on their own — a quarter of the woman’s mitochondria were mutated, but mitochondria are distributed at random in eggs. If an egg with mostly good mitochondria happened to be fertilized, the baby would be fine. They decided to take their chances.
The couple returned to Jordan and had a baby. But the baby had the same mitochondrial disease, Leigh syndrome. It is a terrible disease, Dr. Zhang said. Babies progressively lose their ability to move and breathe. The baby had a tracheotomy and a feeding tube, he said, and the parents had to suction the baby’s lungs every hour.
The first baby died at age 6; the second baby at 8 months.
And so far as the church is concerned, that’s sad, doubtless, but not something that can be helped.
The New York Times:
The couple returned to Dr. Zhang, ready to try the mitochondrial transfer technique. New Hope Fertility Center has a clinic in Mexico, so he suggested doing the procedure there because it is effectively banned in the United States. More than a decade ago, the Food and Drug Administration ordered clinics to file an application to do such work. Later, Congress attached a rider to a bill making it impossible to fund such research.
By six months of pregnancy, the woman said she knew this baby was different. It kicked constantly — the others, affected even in the womb, had hardly moved. Now the boy is 5 months old and healthy, and has normal mitochondria. The birth was first reported on Tuesday by New Scientist magazine.
Reproductive scientists who have been frustrated by the ban were both gratified by Dr. Zhang’s success and angry that it took so long. Britain recently allowed research on mitochondrial transfers to proceed, but nothing has changed in the United States.
In this case, however, highlighted by the Washington Post, they have got things right:
An elite panel of scientists and bioethicists offered guarded approval Wednesday of a novel form of genetic engineering that could prevent congenital diseases but would result in babies with genetic material from three parents.
The committee, which was convened last year at the request of the Food and Drug Administration, concluded that it is ethically permissible to “go forward, but with caution” with mitochondrial replacement techniques (MRT), said chairman Jeffrey Kahn, a bioethicist at Johns Hopkins University.
No, I’m not sure why it is up to them to decide what is or is not “ethically permissible”, but still…
But the advisory panel’s conclusions have slammed into a congressional ban: The omnibus fiscal year 2016 budget bill passed by Congress late last year contained language prohibiting the government from using any funds to handle applications for experiments that genetically alter human embryos.
Thus the green light from the scientists and ethicists won’t translate anytime soon into clinical applications that could potentially help families that want healthy babies, said Shoukhrat Mitalipov, a pioneer of the new technique at Oregon Health & Science University in Portland, Ore.
“It seems like the FDA is disabled in this case by Congress,” Mitalipov said. “At this point we’re still not clear how to proceed.”
Congress should get out of the way.
The FDA released a statement Wednesday saying it will carefully review the report from the advisory committee, but added that the congressional ban prohibits the agency from reviewing applications “in which a human embryo is intentionally created or modified to include a heritable genetic modification. As such, human subject research utilizing genetic modification of embryos for the prevention of transmission of mitochondrial disease cannot be performed in the United States in FY 2016.”
The new clinical procedures should be used rarely, with extreme care and with abundant government oversight, and they initially should be applied only to male embryos, the advisory panel said. The group delivered its report at a morning news conference at the National Academy of Sciences headquarters in Washington.
The report comes at a time of dazzling advances in genetic engineering and a commensurate struggle to understand the ethics of “playing God,” a phrase uttered twice Wednesday by committee member R. Alta Charo, a professor of law and bioethics at the University of Wisconsin.
Then again, as it’s most unlikely that God played God…
The FDA last year asked the Institute of Medicine, now part of the National Academies of Sciences, Engineering and Medicine, to review the ethical implications of MRT since this other method of genetic engineering would result in what has been loosely referred to as “three-parent babies.” British officials have already approved investigatory experiments involving the technique.
Certain serious congenital diseases can be passed from a mother to child via the tiny amount of genetic material contained in the mitochondria, which are small organs within a cell that are often described as the cell’s energy factories or power plants. New experimental techniques involving in vitro fertilization make it possible to replace mutated and potentially disease-associated mitochondrial DNA (mtDNA) with non-pathogenic mtDNA donated from another woman.
Mitochondrial DNA contains 37 genes and is distinct from nuclear DNA (nDNA), which in humans has upwards of 20,000 genes. The mitochondrial DNA is not found in sperm, only in eggs, and thus is passed only from mother to child. That’s why the panel recommended limiting the experimental procedures at first to male embryos.
The males-only guideline is intended to prevent the introduction of unwanted, irreversible genetic changes to the human species. Any genetic changes associated with this kind of engineering will meet a dead end in males.
“If there are adverse events, they would not be reverberating down the generations,” Charo said.
The procedure should be extended to female embryos only after the long-term effects of such novel genetic engineering are better understood, the committee concluded.
Nuclear DNA is by far the more significant form of genetic material for determining most human characteristics. As the committee put it, “[W]hile mtDNA plays a central role in genetic ancestry, traits that are carried in nDNA are those that in the public understanding constitute the core of genetic relatedness in terms of physical and behavioral characteristics as well as most forms of disease.”
As a result, the modification of mitochondrial DNA “is meaningfully different.”
But panel members said that they took the philosophical issues seriously, noting that someone with genetic material from two different maternal bloodlines would potentially have to wrestle with questions about identity, kinship and ancestry.
Not really. The babies who benefit from this technology will have about 0.1 percent of their DNA attributable to a third party. It’s a (very) crude way of looking this, but think how many great, great-grandparents away it would take to account for 0.1% of someone’s ancestry….
To describe the donor as a third “parent” is, to put it mildly, a stretch.
And, as a reminder of what this is about:
The donor provides only their mitochondria. Often called the “power plants” of the cell, the mitochondria converts energy from food into energy that can power a cell. When someone’s mitochondria don’t function properly, it’s bad news indeed…
As one ‘ethicist’ notes:
It is not part of what makes us genetically who we are.It doesn’t affect height, eye color, intelligence, musicality. It simply allows the batteries to work properly…
And as to what’s at stake;
Mitochondrial diseases can cause a whole host of life threatening problems, and it’s estimated that as many as 4,000 children are born with such conditions in the United States each year.
Again, politicians should get out of the way.
Comments off · Posted by Andrew Stuttaford in Science & Faith
Via Andrew Sullivan we have this piece by William B. Hurlbut, Consulting Professor in the Department of Neurobiology, Stanford University Medical Center, a man of science, who is, it turns out, also a fan of the benevolently deranged Francis of Assisi.
There’s plenty in the article for those with an interest in Francis himself, but I was more interested in this:
The traditional role of medicine, for example, has been to cure disease and alleviate suffering, to restore and sustain the patient to a natural level of functioning and wellbeing. The medical arts were in the service of a wider reverence and respect for the order of the created world: “the physician is only nature’s assistant,” as the Roman healer Galen explained.
But now, armed with the powers of biotechnology, medicine has found a new paradigm, one of liberation: technological transformation in the quest for happiness and human perfection. Slowly but steadily the role of medicine has been extended, driven by our appetites and ambitions, to encompass dimensions of life not previously considered matters of health, with the effect of altering and revising the very frame of nature. Increasingly, we expect from medicine not just freedom from disease but freedom from all that is unattractive, imperfect, or just inconvenient. More recent proposals, of a still more ambitious scope, include projects for the conquest of aging, neurological fusion of humans and machines, and fundamental genetic revision and guided evolution — for transhumans, posthumans, and technosapiens.
The danger is immediately evident…
It is? Danger? This all sounds splendid, although count me skeptical as to how far we will get any time soon towards, uh, transhumans, posthumans, and technosapiens. I’m still waiting for flying cars and Moonbase Alpha (which was due sometime before 1999).
In the absence of any concept of cosmic order, where the material and the moral flow forth from a single creative source, all of living nature becomes mere matter and information to be reshuffled and reassigned for projects of the human will.
Well, that absence is what it is. Hurlbut may be uncomfortable with the consequences, but they are what they are—and they need to be faced. He may wish to believe in a “cosmic order” (a fantasy that takes many forms, in any event), but he ought not to be surprised that there are those that disagree that such a thing exists and are thus reluctant to comply with its supposed rules. But that is not necessarily cause for despair. Experience shows that humility and caution in matters of this type are a matter of commonsense, and commonsense has a way, quite often, of winning out. As, if less frequently, does kindness:
Genetically engineered featherless chickens for cheaper pot pies and leaner pigs with severe arthritis are a violation of basic kindness and courtesy.
There’s a great deal more from Hurlbut, and, much of it like the writings of Leon Kass, is, in its glorification or, at least, inshallah acceptance of suffering, as morbid, and, in its implications, as revolting as some of the more lurid iconography of Christian martyrdom. It’s sad to see such words flowing from the pen or keyboard of a doctor who will in his own career surely have done a great deal to alleviate the suffering of others. Such are the contradictions of religious faith.
And then there’s this:
[O]ne can sense a wisdom in the severity and self-denial that were, for Francis, inseparable from the source of his joy. He had rediscovered an ancient truth in the inversion of desire, not as a negation of being but as a positive passion. In the image of the Lord, he emptied himself and received all things back renewed, purified, and restored in their divine glory.
When I read that, I see only an expression of a millennial asceticism that in our modern era has found expression not in the kindly ramblings of an oddball hippy saint, but in revolution, gulag, and the emptied streets of Phnom Penh.
Compared with that, biotechnological advance is relatively risk-free…
The Wall Street Journal has interviewed “eminent bioethicist” (itself a contradiction in terms) Leon Kass. The trigger was the Gosnell trial, but it was this aspect of Kass’s remarks that drew my attention:
Dr. Kass sometimes finds himself at odds with [anti-abortion] advocates. The movement’s narrow focus on nascent life, he worries, blinds it to the fact that “abortion is connected to lots of other things that are threats to human dignity in its fullness.”
“Pursuing perfect babies, ageless bodies and happy souls with the aid of cloning, genetic engineering and psychopharmacology,” he thinks, are among the most significant of those threats.
Not that, again. Of course, we need never to forget the terrible lessons of early twentieth century eugenics, but re-read those comments and what you see emerging beneath those soothing words about “dignity” is a morbid and sentimental attachment to suffering, and a profound contempt for the human mind:
“Killing the creature made in God’s image is an old story,” he says. “I deplore it. But the new threat is the ability to transform that creature into images of our own choosing, without regard to whether the new creature is going to be an improvement, or whether these so-called improvements are going to sap all of the energies of the soul that make for human aspirations, art, science and care for the less fortunate. All of these things have wellsprings in the human soul, and they are at risk in efforts to redesign us and move us to the posthuman future.”
And the corollary of this paranoid, mystical nonsense about a “new threat” is that the state, aided and abetted doubtless by a self-appointed (and sometimes taxpayer-funded) coterie of wise men, will decide that they know best where scientific inquiry should go.
Galileo, phone your lawyer.
Should people be allowed to see details of their own genetic information?
The public discussion about DNA testing tends to focus on ethical dilemmas: What if doctors find that a person’s father isn’t really? Should they tell a patient about a DNA glitch if it’s only occasionally linked to disease? What if, while looking for mutations that could explain a known sickness, they stumble on others that might predict late-life dementia or indicate the presence of HIV? Would adding this data to someone’s medical record affect health insurance rates? What if—gasp—we end up with a real-life Gattaca?
These questions are worth talking about. But the genetics community and popular press spend too much time debating when and how the medical establishment should “protect” people from their children’s or their own DNA.
For example, many bioethicists argue that DNA glitches shouldn’t be disclosed if they’re ambiguous or linked to untreatable conditions. Doing so “may create unwanted psychosocial burdens on parents,” according to a commentary on newborn sequencing in the Journal of the American Medical Association.
Ah yes, bioethicists.
They really are a useless, worthless bunch, philosopher-princelings and wannabe clergymen who hawk their insulting and condescending babble to a political class always looking for new reasons to tell people what not to do.
It is way past time for 25 or so states that have restricted the right of citizens to obtain their genetic information from direct-to-consumer companies to lift their bans.
Indeed it is.
I’m not going to comment (well, overmuch anyway) on this moving, thought-provoking and beautifully-written piece by Michael Wolff, described by New York magazine in these terms:
The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go.
It is a must-read but it should not be used to give any support to the rather disgusting opinions of the likes of “bio-ethicists” such as Leon Kass:
For Kass, to argue that life is better without death is to argue “that human life would be better being something other than human.”
In numerous presentations and papers throughout the years, Kass has argued for what he calls the “virtues of mortality.” First among them is the effect mortality has on our interest in and engagement with life. To number our days, Kass contends, “is the condition for making them count and for treasuring and appreciating all that life brings.”
Kass also believes that the process of aging itself is important because it helps us make sense of our lives.
A 2003 staff working paper drawn up by the U.S. President’s Council of Bioethics — then headed by Kass — states: “The very experience of spending a life, and of becoming spent in doing so, contributes to our sense of accomplishment and commitment, and to our sense of the meaningfulness of the passage of time, and of our passage through it.”
Technology that retards aging, the report argues, would “sever age from the moorings of nature, time and maturity.
Do note, incidentally, that this death-cultist was given the job of running a taxpayer-funded boondoggle (the US President’s Council of Bioethics indeed) by George W. Bush, President “Compassionate” himself.
Obviously (yes, obviously), the further we are able to extend life, the better. The key, however, is extending the quality of life, and there technology, tragically, moves at an uneven pace. At the core of Mr. Wollf’s piece is the fact that our ability to stretch out the life of the body appears at the moment to be running ahead of our ability to preserve the life of the mind, a mismatch that can cause terrible suffering. But the crucial words are “at the moment”. Stories like these are no reason to slow the science down.
Anyway, check out the piece, and see what you think. It’s sometimes painful reading, but it’s worth the time.
Wolff concludes like this:
Anyway, after due consideration, I decided on my own that I plainly would never want what LTC insurance buys, and, too, that this would be a bad deal. My bet is that, even in America, even as screwed up as our health care is, we baby-boomers watching our parents’ long and agonizing deaths won’t do this to ourselves. We will surely, we must surely, find a better, cheaper, quicker, kinder way out.
Meanwhile, since, like my mother, I can’t count on someone putting a pillow over my head, I’ll be trying to work out the timing and details of a do-it-yourself exit strategy. As should we all.
In Brave New World, as I recall, everyone lives into their early sixties, then swiftly declines and dies. That seems to me ideal if the necessary genomic tinkering can be done.
Until it is, sauve qui peut. I have a good selection of guns and have made up my mind that if it comes to diapers, I shall see myself out with a gun. I will not wear diapers—that’s the end point for me, the milestone I am determined not to pass.
I promise not to make too much of a mess. Heart, not head—like Flory in Burmese Days—and outdoors if I can make it: ideally a nice hillside in the Poconos, watching the sun go down, with a good cigar and some decent bourbon for company. But I will not wear diapers.
John, I’ll pass on the (negative) genomic tinkering, thank you very much (but I’ll take any good genomic tinkering, I have always wanted to score a century, at least). That said, I agree with you and Wolff that, in the absence of intervening catastrophe, planning one’s own exit is the way to go, and, I might add, as selflessly as possible. If you’re able to do it yourself, don’t drag others into your decision-making. That’ll only hurt them. Do all the paperwork. Leave everything in order. And then, I think, an overdose of something soothing. I’m no Bradlaugh or Gunther Sachs. I’m not tough enough to pull that trigger. The Poconos? No. Too much of a shock for an unwary hitchiker,and too much of a treat for passing wildlife.Sky-burial is not for me. A hotel room in a favorite place (somewhere in the southwest, perhaps), would do nicely. There would be a large donation on the side-table for the unfortunate who discovered my corpse.
But would I ever be able to decide that now was the time “not to be”? Now that is the question.
“It’s always in bioethicists’ professional interest to suggest that a new technology raises troubling moral issues that require deep (funded) thought and extensive (lucrative) conferences.”
Of all the useless ‘disciplines’ that have come along in recent years one of the more irritating is bioethics (typified perhaps best by the waste of taxpayer dollars that was George W. Bush’s fatuous “Council on Bioethics”). Writing on Reason‘s blog, here’s Ron Bailey with another example of bioethicists at work:
The Washington Post is reporting that privately funded researchers have now managed to use human eggs to produce lines of stem cells for the first time. To achieve this, the researchers installed the nuclei of skin cells in unfertilized human eggs. However, this means that the cells so produced contain three sets of chromosomes. The goal of a lot of embryonic stem cell research is to create tissues that are suitable for transplant by being genetlcally matched to specific patients. This technique does not do this, but may be a step in that direction. Of course, this new research is once again stirring ethical debate, and the Post reports one of the sillier comments:
“They have created human embryos. They are abnormal, but they are still human embryos,” said Daniel P. Sulmasy, a professor of medicine and ethics at the University of Chicago. “Anyone who is opposed to the deliberate creation and destruction of human embryos, as I am, would be opposed to this research.”
Since there is no way that these triploid “embryos” could develop into babies, one is left to wonder on which chromosome Sulmasy thinks the gene allowing for the installation of a human soul must reside?
“Bioethics” is simply someone’s opinion draped in fancy language. And it’s frequently not that well-informed. To the scrap heap with it.
Craig Venter and Hamilton Smith, the two American biologists who unravelled the first DNA sequence of a living organism (a bacterium) in 1995, have made a bacterium that has an artificial genome—creating a living creature with no ancestor… Pedants may quibble that only the DNA of the new beast was actually manufactured in a laboratory; the researchers had to use the shell of an existing bug to get that DNA to do its stuff. Nevertheless, a Rubicon has been crossed. It is now possible to conceive of a world in which new bacteria (and eventually, new animals and plants) are designed on a computer and then grown to order.
The usual suspects will doubtless grumble, but, writing in the Guardian, a slightly over-enthusiastic Ken Macleod gets in his response first:
It’s a tremendous achievement of human ingenuity and skill. And there’s something wonderfully confirmatory of mechanistic materialism in the building of a genome from chemically synthesised molecules, that genome running a cell, and that cell replicating to a point where no trace of the original cell’s cytoplasm is left in its descendants. This lays to rest, with a satisfying finality, the ghost of vitalism – the spooky, whiffy doctrine that there is some essence of life not captured by “reductionist” biochemistry.
He notes that we can expect the “usual TV studio parade of clergy” giving their opinions. Well, why not? Macleod’s “why them?” is a cheap shot, but he redeems himself by adding:
More significant than the clerics are their secular successors, the ethicists – paid to worry so we don’t have to. They’re already on the case.
“Ethicists” are a modern curse, typified best by that waste of taxpayer dollars, the “President’s Council on Bioethics” set up by George W. Bush, and its successor, Obama’s “Presidential Commission for the Study of Bioethical Issues.” Needless to say, the busybody-in-chief has asked the commission to investigate the “implications” of Venter and Smith’s work:
I ask that the Commission complete its study within six months and provide me with a report with its findings, as well as any recommendations and suggestions for future study that the Commission deems appropriate. Given the importance of this issue, I request that the Commission consult with a range of constituencies, including scientific and medical communities, faith communities, and business and nonprofit organizations.
It is vital that we as a society consider, in a thoughtful manner, the significance ofthis kind of scientific development. With the Commission’s collective expertise in the areas of science, policy, and ethical and religious values, I am confident that it will carry out this responsibility with the care and attention it deserves.
Oh, good grief.