Chapter 8: Human Harvest
Our society has a fundamental fear of suffering. We hate it. Our culture has utter disdain for it. We want to eradicate it, ignore it, “shut it up” with ibuprofen, surgically exorcise it, divorce, escape, kill, clone, or cure it. Anything but deal with it. We have nothing but contempt for suffering, for anything that makes life hard or unpleasant.
When it comes to treating people like things, it’s only a short philosophical hop, skip, and a jump to where contempt extends to people who suffer: people who strain Medicare or drain the grandkids’ college fund . . . people who produce nothing and contribute nothing more to society than bills and increased medical costs . . . people — like preborn or even newborn infants with disabilities — who might encroach on a family’s economic security and who seem to have no real potential for a good quality of life. If our culture can’t fix it, cure it, medicate it, sedate it, or surgically remove it, then please get rid of it — because we sure can’t live with it.
In a society with no tools, no true moral guidelines for dealing with pain and affliction, discomfort or inconvenience, the people deemed dispensable are the ones who ultimately suffer. People like the weak and infirm, the elderly and senile, the embryo and the infant. When we have no moral and spiritual resources to shape our view of affliction, then society slips into its “natural selection” way of looking at suffering; and it is the medically fragile who feel the brunt.
It opens the way to “treating people like things.”
It’s why I got involved in the case of Terri Schiavo. Terri was the severely brain-injured Florida woman whose estranged husband fought through the courts to have her feeding tube removed. He maintained that “Terri wouldn’t want to live this way.” Never mind that Mr. Schiavo was living with another woman and had fathered two of her children. Some in our society say that he should be allowed to “get on with his life.” Some believe he actually demonstrated compassion toward his disabled wife.
Those of us with disabilities see it differently. We believe he was blinded by contempt — not only for Terri, but for millions of Americans with disabilities whose lives came in jeopardy the moment the courts ruled in his favor.
If we strip away the heart-wrenching emotions surrounding the case of Terri Schiavo, we are left with a single question: What life value does a person have who cannot speak, move, hear, or see? What standard of evidence should we require when determining the healthcare wishes of a person unable to speak for himself? The Florida courts ruled that Terri’s husband’s recollection of her casual comment after a television program will suffice. Talk about contempt! The courts disguise their prejudice against “disability” with the cloak of “Terri’s right to privacy,” but the fact remains, they ignored her right to life, her right to humane treatment, and her right to rehabilitative therapy. They held her in contempt because of her suffering.
As a quadriplegic, I’m appalled that national polls seemed to favor Mr. Schiavo and the Florida courts. Our society’s disdain of suffering has now, indeed, extended to those who suffer, those who are severely brain-damaged, minimally conscious, in comas or persistent vegetative states. They are in deep trouble. They are on the verge of being treated as things.
God help us.
JONI
For several months before 9/11, the dominant issue in American politics was not the economy or national security, but whether the US should fund research on human embryos. It was so important that President Bush chose to make it the topic of his first televised broadcast to the nation. Commentators suggested that this could be the “defining issue” of the Bush presidency. Those of us who had been saying for years that the questions raised by biotechnology would dominate the twenty-first century saw our predictions starting to come true.
And while the terrorist attacks and the US response soon drowned the biotech discussion, it returned in full force in the 2004 election campaign. The highlight of the Democratic Convention was a speech by Ron Reagan Jr., son of the late president, that praised the possibilities of what is known as “therapeutic cloning” (though he avoided using the phrase). Senator John Edwards, Democratic candidate for vice president, declared in one of the most bizarre statements in American politics that with Senator John Kerry, the Democratic challenger, as president, people like quadriplegic superstar Christopher Reeve would be able to walk again. The “biotech century” had arrived!
We saw in chapter 6 how cloning works. An embryo is created without the need for sperm to fertilize an egg. Instead, scientists replace the genetic material in the egg with some from another cell — in principle, from any nonreproductive cell. Embryo research itself is not new. It has been possible since the 1970s, when in vitro fertilization was developed. But in the past, most scientists and governments have remained wary of the ethics of experimenting on embryos, especially if it involved creating them specially for that purpose. The UK, where both in vitro and cloning were first invented, has long been the most liberal nation in the Western world in its approach to these technologies and human dignity. In the US, some states have laws that forbid embryo research. While no federal law exists on the issue, no administration, Democratic or Republican, has ever funded research that destroys embryos.
But cloning has changed the climate among scientists and also in the press. Its dehumanized method of making humans, since it does not involve the penetration of an egg by a sperm, makes it even more offensive to some people, so deep distaste toward experimental cloning began to take hold early in the debate. It looked very likely that Congress would vote to outlaw the technology, as have many other nations.
But things changed. Enthusiasm began to grow in the scientific and biotech communities for so-called “therapeutic” cloning as a possible treatment for incurable diseases, such as Alzheimer’s and Parkinson’s, through the mass production of embryonic stem cells tailored to the patient. And the biotech industry, through its Washington-based trade organization BIO (the Biotechnology Industry Organization), stepped up its advocacy using vast resources that included radio and print ads, lobbying, and donations to Republican groups as well as other political funds. They pressed the possibility of curing these and other diseases, if only they could manufacture cloned embryos for experiments and to produce one-on-one medications.
They used many techniques to make their point and focus media attention on the need for “Cures Now,” to quote the name of one of their organizations. They paraded celebrities before congressional committees and the media (most memorably Christopher Reeve in his wheelchair), and among other stunts staged a gruesome “hanging” of handicapped people to illustrate how those who opposed cloning were sentencing them to death.
On the other side of the fence, three things were in progress. First, Christians continued to get organized. Though without the vast resources available to the biotech industry, a combination of pro-life and pro-family groups, together with the Southern Baptist Christian Life Commission and the US Conference of Catholic Bishops, worked closely in cooperation to inform their diverse constituencies of the importance of these issues, and to encourage them to pressure their representatives on Capitol Hill. Second, an informal coalition brought together pro-life leaders and representatives of environmentalist and pro-choice feminist groups, together with others, including some (pro-choice) United Methodists — pro-choice groups that on this issue allied with pro-lifers, and sought either a ban on all cloning, or at least a serious moratorium. Third, the science debate took some unlikely turns. It became increasingly clear that the claims for “therapeutic” cloning using tailor-made clonal embryos to manufacture medicine were mainly hype. Meanwhile, every few days an article would appear showing that “adult” stem cells could do the job better — and in many cases, now.
HOW DO WE BAN CLONING?
Two basic approaches have been proposed for how to ban cloning, both in the US and around the world. One favors a partial ban with the goal of preventing the birth of cloned babies; it permits the cloning of human embryos for research. The second approach is comprehensive, prohibiting any use of cloning technology involving the human species.
At first sight, the partial-ban approach seems prudent. It gains support from two very different groups: those who favor a comprehensive cloning ban but who wish to attain it in two stages; and those who wish to ban the birth of cloned babies but who support the cloning of human embryos for research. But this approach has some clear problems.
First, if the cloning of embryos for research is permitted, the policy can be applied only by requiring that they also be destroyed. Since biotech advocates need very large numbers of embryos for the “therapeutic cloning” model to work, very large numbers of embryos must be destroyed. Policy makers with varied views on the nature of early embryonic human life have found the principle of creating and destroying huge numbers of embryonic human beings unacceptable.
Second, if the cloning of embryos for research is permitted, it will perfect the very technology that can be used to clone embryos for implantation and live birth.
Third, if the cloning of embryos for research is permitted, many millions of cloned human embryos will be produced in laboratories. It is inevitable that some of these embryos will be implanted and result in the birth of cloned babies. Many motives will be cited, all the way from criminal intent and financial reward to pro-life “rescue.” One way or another, the mass production of research-cloned embryos will result in the birth of cloned children.
In fact, there is no better way to protect against the mass production of human embryos for experimental purposes than by putting in place a “cloning ban.” Encouraging the mass production of embryos will make more, not less, likely the birth of cloned human beings.
AMAZING STEM CELLS
Much of the debate has turned on “stem cells,” those cells that have the inbuilt capacity to become other cells. That means that, in principle, they could cure diseases in which cells are damaged, diseases — like Parkinson’s and Alzheimer’s — that are devastating and have proved hard to treat. Stem cells in the embryo can be used only by destroying the embryo (at four or five days old). Stem cells also exist in the blood from the umbilical cord, and in many parts of the adult body. Big debates are taking place about which of these many stem cells will prove the most useful in curing terrible diseases. But, so far, all the cures are coming from “adult” stem cells that do not involve destroying embryos.
Truth in Reporting:
Dr. James Dobson’s Speech at the National Press Club
I implore every reporter and editor at every newspaper, radio outlet, and TV station in the country to reflect . . . as they sit down to write about the stem cell issue. To ignore the scientific realities, to fail to report that embryonic stem cell research is the less promising course of action, to allow people who are suffering to develop false hope about possible treatment breakthroughs, is an unconscionable betrayal of the public trust.
Unfortunately, the media has chosen to focus on the unproved promise of embryo stem cells and almost entirely ignores the real cures already demonstrated from “adult” cells. Dr. James Dobson, founder of Focus on the Family, spoke to journalists at the National Press Club, pleading with them for honest reporting. “Embryonic stem cells are not going to be the source of a cure for Alzheimer’s,” he declared. He continued: “Are you aware that not one human being anywhere in the world is being treated with embryonic stem cells? There is not a single clinical trial going on anywhere in the world, because embryonic stem cells in laboratory animals . . . create tumors. Nobody will use them.”
The term “therapeutic cloning” has been coined to describe a powerful idea. Many scientists want to be able to clone you and me, so that stem cells may be harvested from our own twin embryos and used to treat our diseases. This is the idea that Ron Reagan Jr. promoted at the Democratic Convention in 2004. No one knows if this will work; it has not been done reliably even on animals. And it involves what many of us see as the ultimate horror: you clone yourself so that your own twin brother or sister, destroyed as an embryo, provides medication to cure you. Make no mistake: This is a human harvest.
CLONING ON THE COASTS:
NEW JERSEY AND CALIFORNIA
But it gets worse. In the state of New Jersey, a bill signed into law in January of 2004 not only permitted cloning to make embryos to produce stem cells, but permitted the implantation of the cloned embryo in the womb — so long as there is no live-born baby. What did its sponsors have in mind?
Representatives of the biotech industry pushed for the bill. There is only one reason they could have included this provision: They intend, down the line, to solve the problem of generating new tissue by implanting the cloned embryo in a uterus, growing the embryo for weeks until organs and other tissues develop, and then using those tissues for transplant. This gruesome future takes the idea of a “human harvest” further into the brave new world. It is the only logical explanation for the way the New Jersey law was written.
Meanwhile, in California, a combination of celebrities and investors spent some $35 million to set up an institute for stem cell research through Proposition 71, an amendment to the state constitution. The initiative was passed by a 59 – 41 percent margin in November 2004, fed by expensive and dishonest TV advertising (they outspent opponents of the measure by around 100:1). The institute has $3 billion of funding and will focus on embryo stem cell research — and cloning to get the embryos. This bizarre project already has produced startling effects in other states, as they rush to fund their own projects. No one is asking (a) whether it will ever work (there is almost no private investment going into embryo stem cell research, which suggests that savvy biotech investors are taking a pass); or (b) why countries like Canada have decided to ban it.
As Steve Milloy, publisher of JunkScience.com, commented on Fox News: “If embryonic stem cell research had real and imminent possibilities, private investors would be pouring capital into research, hoping for real and imminent profits. Instead, venture capital firms are contributing to political efforts to get taxpayers to fund research. . . . What the venture capitalists seem to be hoping for is that taxpayer funding of stem cell research will increase the value of their stakes in biotech companies. The venture capitalists can then cash out at a hefty profit, leaving taxpayers holding the bag of fruitless research.”
THE GLOBAL DEBATE
To underline the unique significance of this debate, the United Nations has discussed proposals to develop an international convention that would ban cloning around the world.
Rebecca Griffin’s Story
“Alzheimer’s disease” was a familiar term to me long before it became the hot topic on the Hill because of President Reagan. . . . I was only nine years old when my father was diagnosed with Alzheimer’s disease, and I spent the next seven years as one of his primary caregivers, along with my mother. We cared for him at home because we couldn’t afford to put him in a nursing home until the beginning of my senior year of high school. He died two weeks before finals my freshman year of college. I hadn’t seen him since Christmas.
The events surrounding Reagan’s death struck a very personal note for me, but the policy debates that will intensify because of them will likely hit even closer to home.
“Embryonic stem cell research” is almost always mentioned in the same breath as Alzheimer’s disease, floated as the way to reach the cure, or at least ease the suffering. This seemingly worthy cause gets many celebrity endorsements, from Nancy Reagan to Michael J. Fox and Christopher Reeve, all with their own twists on the miracles it could create. . . .
As a caregiver who has lived through the situation myself, who has heard all the sweet promises handed out after the hopeless diagnosis, I say this to other sufferers: don’t listen to them. Don’t buy into this hoax.
The appeal to caregivers is the attractant on a moral Venus flytrap. Those who push for a lifting of the experimental ban and for government funding of the research dangle hope in front of desperate, hurting people, in return for public support. It is exploitation at its most debased and repugnant, but too many are letting themselves be persuaded anyway.
But even if there’s no hope for us, what about the people who will be diagnosed in the future? That’s an equally powerful line of argument; we all fear getting older, and especially those of us who have been caregivers are terrified of what might happen to us. Medical science has advanced by leaps and bounds just over the past couple of decades without this macabre research. Besides, if we open this door, where do we stop? We set ourselves up as the ones who get to decide who has the right to live, and who doesn’t, who has a disease that’s important enough to cure, and who needs to just suffer — who is really a human being, and who isn’t. If you’re created in a petri dish, you’re not a human; if you’re created in a womb, you are: what kind of brave new world do we want to pass on to our descendants, assuming we even have any?
I have another perspective on the embryonic stem cell debate — because of my father’s age, I had to be conceived in vitro by a sperm donor. I was one of those “test tube babies” that could just as easily have been sacrificed because I wasn’t quite human enough to matter.
Germany and France first came to the United Nations in 2001 with a proposal for a ban on “reproductive cloning” — that is, cloning that produces a live-born baby. They apparently expected swift agreement to their proposal and were surprised to find firm opposition from the United States. The US took the view that only a comprehensive ban on cloning would achieve the desired result — to prevent the birth of cloned babies. A halfway house that permitted the development of cloning for embryo research would in the end make it more likely that cloned babies would be born. In the spring of 2005, the United Nations General Assembly voted by nearly 3-1 in favor of the United Nations Declaration on Human Cloning, calling on all nations to prohibit all forms of human cloning.
Judgment Calls
Life and death become judgment calls, subject in some cases to ethics committees’ determinations and hospital guidelines. But who decides what our ethics will be? If there is no truth, there are no true ethics, only prudential standards that reasonable people try to apply.
CHARLES W. COLSON, THEGOODLIFE
Meanwhile, the world’s first bioethics treaty, the European Convention on Biomedicine and Human Rights, has been signed by many European states. Article 18 of the treaty prohibits the creation of embryos for research. An extra “protocol” has been added that bans human cloning, although without specifying how cloning should be prohibited and — as diplomats sometimes do — using ambiguity to cover up disagreement. If the cloning ban and the ban on creating embryos for research are put together, however, the world’s one bioethics treaty plainly bans embryo cloning for any purpose.
This reflects the position of many European countries. Americans often speak of Europe as “liberal” and “post-Christian,” and to a degree they are right. Church attendance is far lower than in the US, and there are much smaller pro-life movements in Europe. But on these biotech questions, very conservative positions have been taken in many countries, beginning with Germany, which since World War II has served as the conscience of the world on biotechnology. As we saw in chapter 4, Germany knows from its Nazi past what it means to have science and scientists run out of ethical control, and so German science is marked by a determination that it will never happen again.
Germany banned cloning (for any purpose) back in 1990; many other countries followed suit, including, most recently, Canada and France. Other countries with comprehensive cloning bans include Australia and Norway. Many nations — including those with liberal abortion laws and small pro-life movements — have decided to prohibit “therapeutic cloning.”
The world needs to follow their lead.
Every night my paralysis forces me to bed around 8:00 p.m. It’s partly because my body is wearing out after more than thirty-eight years in a wheelchair. In bed, I look face up at the ceiling and let gravity sink me into my mattress. It’s a good time to pray; it’s also a chance to watch some good TV. Last night I flicked on a PBS special, “Innovation: Miracle Cell.” When I learned it described the new therapies under development using adult stem cells, I asked my husband to turn up the volume.
The program immediately gripped me. The camera focused on nineteen-year-old Laura Dominguez, sitting in her wheelchair. Laura broke her neck and became paralyzed after a car accident in 2001. She smiled, looking young, bright, and attractive. She had reason to smile. Last year, Laura traveled to Portugal for an extraordinary operation. First, they drew stem cells — her body’s own “repair cells” — from the lining in her nose, delicately separating the cells and treating them with awe and respect. So they should; those cells were like blank slates, able to turn into most any tissue, including that which would “fit” in Laura’s spinal cord. The doctors then transplanted the miracle cells, gently packing them into the damaged portion of her spine. Three months later, Laura could move her foot and regained a significant amount of feeling in her back and legs.
For me, a quadriplegic, the amazing news took my breath away.
One doctor smiled at the interviewer and stated, “I will be able to say to somebody with a spinal cord injury, ‘Yes, you will walk again,’ as opposed to telling them, ‘Life is good from a wheelchair.’ ” I smiled too and thought of the irony of doing so — there I was, a chronic spinal-cord-injured woman, lying paralyzed in bed, rejoicing in the success of another’s healing.
Miracle Cells
My daughter is Laura Dominguez, who is one of the first Americans to have adult stem cell surgery in Portugal by Dr. Carlos Lima. It has been brought to my attention that you have mentioned my daughter’s name when talking about adult stem cells. My daughter, in our opinion, is living poof that the Portugal procedure works and that adult stem cells are miracle cells.
— ABEL DOMINGUEZ IN A PERSONAL EMAIL
TO JONI EARECKSON TADA, FEBRUARY 8, 2005
The TV program highlighted other success stories: a teenager with a punctured heart, healed through a stem cell transplant from his own blood; a little boy who no longer has cancer because of a transplant using stem cells from the umbilical cord of his little brother; and more spinal-cord-injured persons who are seeing amazing progress from transplants using stem cells from their own bone marrow and nose tissue.
It thrilled me to think of the many paralyzed people who, as I write, are applying for similar new therapies here in the US. About one hundred people in wheelchairs soon will have the chance to undergo the same operation. No wonder they are excited! Adult stem cell transplants are safe, with no chance of tissue rejection — and for the most part, they’re successful. These incredible new therapies are giving hope to people and helping them regain functional skills and some movement!
The thing that struck me most was the doctors’ comments. One doctor announced that, “Self-therapy is safe therapy!” Another said, “This will revolutionize modern medicine!” Another doctor applauded how natural, how relatively easy regenerative medicine is. Stem cells from embryos are programmed to grow; stem cells from adults are there to heal and restore. That’s what encouraged me most as I lay in bed. Yes, I am a quadriplegic and aware of the need for spinal cord injury cure; but I’m also a Christian concerned that a cure be both safe and ethical.
Ethical Stem Cells Work!
Hwang Mi-soon had been paralyzed and bedridden for 19 years due to a back injury. About 30 days after the [adult stem cell] operation, Hwang stood up from her wheelchair and shuffled a few paces back and forth with the help of a walking frame. With tears in her eyes, she said at last week’s press conference, “This is already a miracle for me. I never dreamed of getting on my feet again.”
KOREATIMES
I watched young Laura Dominguez lift her leg and beam with joy. Whether regenerative medicine is for me, is not the issue. The point is this: There is hope. Real, amazing, within-reach hope! Hope for people with spinal cord injuries, with heart disease, diabetes, Alzheimer’s, and cancer.
But some people refuse hope.
Michael Kinsley works as an editor at the Los Angeles Times. He’s also been struggling with Parkinson’s disease since 1993. He is looking for a cure. Fast. He’s frustrated that President Bush has upheld a ban on using taxpayer money to fund the destruction of human embryos in order to harvest their stem cells. (Never mind that Bush’s administration was the first to come up with a compromise permitting federal funds to go toward research on a limited number of private stem cell lines.) Michael still reasons, “Meanwhile, there are nearly 400,000 human embryos sitting in the freezers of fertility clinics, almost all of which will eventually be destroyed.”
The reasoning is flat and pragmatic. If you believe that destroying an embryo is not on the same moral plane as murdering your neighbor, then what’s the fuss? Michael says, “Anyone who opposes stem cell research on moral grounds had better be willing to look me in the eye and say: ‘Mike, I know that preventing stem cell research means blocking a major avenue of hope for you and one million American Parkinson’s sufferers, as well as for victims of other diseases, including cancer. I know that an embryo is a clump of cells invisible to the naked eye . . . but I would rather ruin your life, health, and hopes than allow this miracle research to continue.’ ”
Well, I was willing to look Michael Kinsley “in the eye” when we debated this subject on PAX TV’s “Faith under Fire.” With my spinal cord injury, and his Parkinson’s, we appeared to be on a level playing field. That’s about all we had in common. Mr. Kinsley insisted that an embryo is on the same plane as a potato. Worthless. To be used or discarded.
During the debate, I reminded him that he began his journey on planet Earth as one of those embryos. It didn’t seem to faze him. Neither did the examples I listed of paralyzed people who are now walking as a result of adult stem cell therapies. What’s more, Mr. Kinsley refused to hear about the advancements already happening in treating Parkinson’s with adult tissue therapies. Like so many in politics and the media who seem enamored by the pharmaceutical companies, venture capitalists, and biotech industry, Mr. Kinsley would rather remain morbidly fixated on a lie (like Gollum in The Lord of the Rings) than seek honest-to-goodness hope and healing. As we debated I felt sad for him.
Testifying at the US Senate
When I testified at a Senate hearing on stem cell research, this was my case: that either we respect the dignity and rights of all human beings, all members of our species, or we do not — we can’t logically pick and choose. Dr. Arthur Caplan of the University of Pennsylvania, one of the most influential bioethicists in the country, sat beside me and testified next. He started by denying what I had said — the early embryo, he said, was not a member of Homo sapiens, the human species. It was an amazing statement, so much so that I intervened and asked Senator Specter — who was chairing the hearing — if Dr. Caplan would care to repeat his statement, which he did. And he added: otherwise it would have moral implications.
Which, of course, was my point.
NIGEL CAMERON
I’m not the one ruining Michael Kinsley’s health and hopes. Just like that sad little creature in The Lord of the Rings, his injury is self-inflicted. For there is hope. There are answers. There is life and health. All he needs to do is walk into the Detroit Medical Center sometime to watch Laura Dominguez practice walking with her braces.
JONI