Chapter 10: A New Slavery
I will never forget the first day of my honeymoon as Ken and I headed to Hawaii. When he carried me across the threshold of the airplane, the flight attendant directed us to the first row of seats, away from the view of the few other passengers in first class. We got lots of special treatment: a surprise cake, Hawaiian leis, and orange juice served in crystal glasses on a silver tray. Everyone on board must have known that it was our first full day as a married couple. We snuggled down into the high backs of our comfortable seats for the long flight to the islands.
After about an hour in the air, a flight attendant reached for our window shade and said, “We’re about ready to begin the movie.” Ken pushed our seats back, put the earphones on me, stuffed a pillow between us, and we got ready for the film. The cabin became dark and the credits began to roll. Not but a few feet in front of my face appeared the large letters of the movie title: Whose Life Is It Anyway? Immediately, I recognized it as the film about a despondent quadriplegic who hates his life in a wheelchair.
The dialogue details his argument with his family and doctor to let him die. He argues that he has the right to do with his body as he wishes, even if it means insisting that three grams of phenobarbital be injected into his veins. What a depressing film! And what an awful thing to be hit with on the first day of our marriage. One of the flight attendants returned to apologize with a sympathetic, “And here it is your honeymoon!”
I really wasn’t bothered by the incident. I know to whom my life belongs. Whose Life Is It Anyway? came to mind, however, when I pondered the topic of this chapter. The biotech industry wants to be able to own human beings. They have already patented genes; now they want to be able to patent human embryos and fetuses on which they have experimented. It begs the question: Whose life is it anyway?
When biotech enthusiasts and overzealous researchers sniff progress, watch out! Back in the sixties when I first became paralyzed, I languished in the hospital for months with nowhere to go — a bed in the local state institution had not yet become available (there were no rehab units in Maryland back then and doctors saw no hope for me). During that time, a pulmonary research specialist wanted to perform several tests on me. The gains for research seemed laudable, but when my parents learned it would involve certain drugs, they said no. We shook our heads, wondering what other patients did with no families or advocates to speak for them.
Biotech experts tend to encroach when life appears vulnerable, weak, or of little value. Perhaps it’s an elitist mentality. Perhaps it’s the rare air of cutting-edge research that makes them giddy, makes them feel absolved from wrongdoing, or convinces them their actions are beyond scrutiny.
My brush with research occurred back in the sixties. Today, it’s a different story. A more dangerous story — if research cannot be performed on hapless quadriplegics, then let it be performed on human embryonic, fetal, or newborn life. When it comes to owning human flesh, fools rush in where angels fear to tread.
Second Corinthians 5:15 – 16 states, “And he died for all, that those who live should no longer live for themselves but for him who died for them and was raised again. So from now on we regard no one from a worldly point of view” (emphasis added).
We know whose life it is, anyway.
We are God’s.
JONI
As the world celebrated Jonas Salk’s invention of a vaccine for the terrible scourge of polio back in 1955, legendary American journalist Edmund R. Murrow asked the Nobel laureate, “Who has the patent on this vaccine?” Salk’s reply is almost as famous as his vaccine. “Well, the people, I would say. There is no patent. Can you patent the sun?”
Things have changed, and are changing fast. As law professor Lori B. Andrews has shown in her book Future Perfect, it was during the 1980s that the life sciences, and genetics in particular, shifted from “a public interest activity to a commercial one.” This represented a huge change. Governments and universities have traditionally funded science, and scientists have felt eager to publish their results — not least, as a way to build their reputations and advance their scientific careers. This has radically changed, with a shift into the private sector of growing areas of research and development, especially in the life sciences.
Some biology professors have become multimillionaires, and many others entertain hopes that they will soon be able to join them. They sit on the boards of biotech companies, and thanks to the so-called “technology transfer” laws, their universities are now strongly motivated to develop their inventions commercially and then give professors a cut of the profits (typically 30 percent). In this way, universities pull in well over one billion dollars each year.
This may or may not be bad, but it is new and is reshaping the way in which both science and business are being done, as well as giving scientists themselves big motivation and equivalent resources to try and shape science policy. Meanwhile, key changes in the way in which the patent law operates have begun to cast a long shadow over the ethics of this new situation, especially in relation to what can now be “owned” by companies and individuals.
Lawyers refer to this as “intellectual property.” Just as you can own a house, you can own a trademark, or an invention (called a patent), or a song (called a copyright). If they belong to you, within limits you can do what you like with them. You can sell them; you can prevent others from using them; or you can require people to pay you whatever you can get for the privilege.
In principle this is a very good idea, and it goes all the way back to the US Constitution and before. It means that people receive encouragement to come up with new ideas, and once others get to hear about them, they can’t simply help themselves. When people come up with really good ideas that everyone wants or needs (like Microsoft’s software, or songs by the Beatles), huge amounts of money can change hands, and those who own the rights can become extraordinarily wealthy as people need to pay them for the privilege — often very small sums, but in very large numbers.
PATENTING THE SUN?
Why does this matter? Because, starting with a decision of the US Supreme Court in 1980, the trend has been to grant “intellectual property” rights to scientists and businesses over slices of the natural world. In a landmark case in 1980, the Supreme Court granted a patent on a lowly form of life — a bacterium. This surprised many people, since it had been widely assumed that because patents are issued only on “inventions,” and exclude “products of nature,” the life of natural organisms would remain beyond the reach of such claims.
It did not stop there: the 1980 decision led directly to the patenting of human genes, which enabled those who had identified the gene to claim it as their own — and require royalties, for example, on tests and treatments that used the gene.
While this may seem bizarre to the outsider, it has become standard practice. Some genes in your body and mine “belong” to someone else, as you will find out if you ever want to test them.
Consider a few examples of the way things are moving.
The University of Texas’s famous M. D. Anderson cancer center has patented dogs — sick beagles, made sick for experimental purposes with radiation. After a public challenge by an animal welfare organization, the embarrassed university decided to abandon the patent.
In October 2000, the Washington Post reported: “An inventor can talk about building a better mousetrap. But, five years ago, scientists announced that they had built a better mouse — and had patented it. The new breed, dubbed PDAPP, was genetically engineered to develop signs of Alzheimer’s disease, giving scientists a valuable tool for understanding the disease and testing new ideas for treatments.” But soon the company was taken over by another that did not let anyone use their mice. When a researcher developed a similar mouse of his own, he could not use it to test drugs or find treatments, as it would infringe the patent and therefore be illegal. And the threat of lawsuits is real: in 1999 Elan Pharmaceuticals, who held the patent on the original mouse, sued the Mayo Foundation when it developed mice it considered similar.
Two years later, an advocacy group uncovered a patent held by the University of Missouri that describes a method of making cloned animals; it also lays claim to “the cloned products produced by these methods.” This particular patent does not use language that makes clear it is not applied to humans. The Post comments that, “There is no specific law that excludes clones or other genetically modified human beings from being covered by patents. Some legal experts feel that constitutional law, particularly the 13th Amendment’s prohibition of slavery, would rule out human patents. But others are doubtful.”
Meanwhile, the New York Times reported on what it described as a case of “Brave New World meets the Marx Brothers.” The European Patent Office in Munich had, by accident, it seems, slipped through a patent on the cloning of a human being that “may have granted scientists the right to change the genetic makeup of the entire human species.” The Times comments:
Patents have long been issued by governments, granting the exclusive right to profit from commercially applicable inventions. Biopatents, however, are recent and are largely based on one laboratory mouse. In 1988, Harvard University patented the first “transgenic” animal, a genetically altered mouse predisposed to getting cancer. After a patent moratorium in the United States ended in 1993, biotech investors turned bullish on brave new mice (and cows, pigs, and, most famously, Dolly, the cloned sheep) because of biopatents.
So human genes already have been patented and human clones may have been patented by accident. Laws intended to encourage invention have been used to make private claims on parts of our bodies (and many other creatures). The dividing line between people and property is getting blurred, and as the financial rewards from these technologies grow, the pressure is on to defend human life from being turned into a commodity.
Patents have already been issued by accident on human beings, both in the US and in Europe. And no US law prevents their being issued deliberately. In fact, after the 1980 Supreme Court case that allowed the patenting of a bacterium, despite the policy of the Patent and Trademark Office (which opposed issuing the patent), there has been growing concern that the courts could overturn another internal PTO policy — against patenting human beings.
THE WELDON AMENDMENT
In response, Dr. Dave Weldon, the congressman who has taken a lead in the House of Representatives in seeking a ban on all human cloning, introduced a modest amendment into the appropriations process that provides funding for the federal government. Using a technique that uses control of the purse strings to affect how money gets spent, Dr. Weldon proposed an amendment to the bill that funded the Patent and Trademark Office that would make it illegal to use federal dollars to issue patents on human organisms. On the floor of the House, Dr. Weldon argued that, “Technology can be used to undermine what is meant to be human.”
So in an attempt to limit the distortion of human dignity for profit, through the patent system, his amendment stated, “None of the funds appropriated or otherwise made available under the act may be used to issue patents on claims directed to or encompassing a human organism.” As the Patent and Trademark Office cannot issue patents apart from funds allotted during the appropriations process, the amendment essentially functioned as a ban on the patenting of human organisms as products of cloning or any other biotech process.
While hailing the great benefits in health and knowledge that accrue to society through biotechnological advances, Weldon cautioned that the pace of developments, coupled with the dynamite of “rogue scientists” who refuse to place ethical restraints upon their research, demands a collective response. Noting that the monopoly of patent protection, once granted, lasts for twenty years, Weldon asserted that Congress should take immediate action to ensure that our nation would not bestow upon researchers an opportunity to gain financially by an “exclusive right to practice such ghoulish research.” Weldon called upon Congress to affirm the existing (bipartisan) policy of the PTO against granting patents on human beings at any stage of development. Weldon reassured his colleagues that the amendment would not bear upon stem cell research or gene patenting, but only on “human organisms, human embryos, human fetuses, or human beings.”
President George W. Bush to the Biotechnology
Industry Organization Congress, 2003
As men and women of science you have accepted a moral calling to improve lives and to save lives. That calling also requires a deep respect for the value of every life. Because even the most noble ends do not justify any means.
The Bush administration gave its support to the Weldon amendment in the form of a letter from the director of the PTO, which stated it would welcome the support of law for its policy of refusing patents on embryos. But when the bill got to the Senate, it ran into sustained lobbying by the Biotechnology Industry Organization (BIO), the trade group of biotech companies (which also has lobbied hard against a comprehensive cloning ban). BIO and its various affiliates called on citizens and researchers to lobby their senator and stop the amendment from going through, and senators received a barrage of emails and calls from people who had been told that the Weldon Amendment would “prevent cures” for diseases. Meanwhile, BIO claimed the right to patent embryos that had been created through “human intervention,” specifically including a “genetically modified embryo.”
BIO’s lawyers and lobbyists pressed hard through their allies in the Senate to have the amendment removed from the bill, but it had the support of the Republican leadership in House and Senate, and gained approval in the conference committee where House and Senate members come together.
As Richard Doerflinger, biotech expert at the US Conference of Catholic Bishops, said: “Unethical researchers and biotechnology companies are willing not only to create and destroy embryonic human beings for research purposes, but even to patent these fellow humans so they can license, market, buy, and sell them as mere commodities.” He added: “By prohibiting patents on human organisms, Congress has helped prevent such gross abuses and has taken some of the profit motive out of the drive for human cloning.”
Scientists or Businessmen?
One prominent journalist has criticized the media for the way in which they still quote “scientists” as if they were independent commentators rather than, in many cases, corporate executives who happen to be biologists too. Writing in Washington Monthly magazine, Neil Munro suggests that, “By keeping one foot in business and one in the university, these scientist-businessmen get the best from both worlds. As academics, they get plaudits from their peers . . . not to mention federally subsidized laboratory space and an endless supply of underpaid graduate students eager to help develop the next cutting-edge idea. As entrepreneurs, they get access to wealth and the investment capital needed to launch a first, second, or third company.”
Munro gives as an example Irving Weissman, the Stanford professor who has played a huge role in advocating “therapeutic cloning” embryo stem cell research. “Weissman has already made millions of dollars through three companies he’s founded — Systemix Inc., Celltrans Inc., and StemCells Inc., the last two of which he still helps manage — which use the stem cell technology. When President Bush announced last August that he would give narrow support to such technology, the market value of StemCells Inc. briefly shot up by 45 percent.”
Its importance is underlined by a far-sighted report in the Wall Street Journal back in 2001. After noting that “ethical prohibitions embodied in patent law in the US and Europe are preventing scientists from securing patents on some pioneering biological inventions,” science reporters Antonio Regalado and Meera Louis say this: “These applications are testing legal limits and setting the stage for what many expect will be an eventual legal challenge to allow patents to cover human reproductive cloning as well.”
As we survey what lies ahead, we begin to see why “intellectual property” issues are so vital. Bioscience is becoming more and more part of the corporate life of the world, and profit-seeking scientists and entrepreneurs together need to be given a clear message: human life is not a commodity. The law already has gone much too far in allowing patents on human genes. It has, only just, been held back from issuing patents on human embryos. The question of who owns what, and what may never be owned, goes to the heart of the struggle for human dignity that will determine the course of the twenty-first century.
I’ll never forget the day I visited the Nazi concentration camps of Auschwitz and Birkenau. Even though the grounds of the death camps looked tidy with wispy wildflowers around the base of their brick buildings, they were depressing places.
When I noticed a row of rosebushes planted yards away from the gas chambers, our guide quickly pointed out that where the flowers are, once there was hard, naked clay, with every blade of grass picked clean by starving prisoners. I looked around and could easily imagine the barbed wire and the guard towers, the ominous chimneys rising above ovens and the rows of barracks.
My husband Ken helped lift me in my wheelchair up the few steps to the museum. Once inside, I slowly wheeled past the displays of eyeglasses and hair. Then another display caught my eye. Behind the glass I saw piles of leg braces attached to shoes, canes, crutches, and hearing aids. Next to the piles lay stacks of yellowed, dusty record books which neatly tabulated the names and numbers of thousands of disabled people.
I shivered. Not so much from the cold as from the thought that people disabled just like me were the first to be exterminated, labeled as “useless bread gobblers.” Hitler’s strategy to eradicate people with disabilities progressed in stages. First it was compulsory sterilization; then a formal killing operation, known as Aktion T4, quickly followed. More than 275,000 disabled people were murdered in the T4 program, not counting those killed in institutions after the program ended and those in occupied countries. The Naz is especially targeted disabled children — untold numbers perished in institutions governed by the T4 program. Nazi ideology considered disability a sign of degeneracy. A sign of weakness. An open passport to abuse.
The horror took place years ago. But don’t think it couldn’t happen again!
In Indiana, an infant with Down syndrome was denied simple surgery and starved and dehydrated to death; two judges declined to stop the abuse. A medical team in Oklahoma used a “quality of life” formula to urge nontreatment for babies with spina bifida — a formula that meant most of the families so urged were poor and uneducated. Twenty-four babies died, most from untreated infections. No criminal charges were ever filed against the medical team. It reminds me of Proverbs 17:15, “Acquitting the guilty and condemning the innocent — the LORD detests them both.”
Our age invites us to embrace policies that devalue human life. I see a direct connection between removing a brain-injured woman from her feeding tube, to the use of human embryos in stem cell research, to the patenting of people’s genes.
The moral vacuum of the Nazi death camps held the seeds of our twenty-first century utilitarian medicine. Look at what Willard Gaylin, M.D., a doctor and renowned bioethicist, stated in Harpers Magazine: “Preventive medicine drives up the ultimate cost of healthcare to society by enlarging the population of the elderly and infirm. The child who would have died from polio will grow up to be a very expensive old man or woman. . . . Good medicine keeps sick people alive, thereby increasing the number of sick people in the population.” Note how money influences medical policy. It’s 1 Timothy 6:10, “For the love of money is a root of all kinds of evil.”
Earlier generations would never have sanctioned the patenting of people’s genes — indeed, patenting people. Harvesting organs from unborn humans, designing babies, and using computers to enhance people’s physical and mental abilities does not enjoy universal support or agreement, even in many secular societies. That alone should cause us to pause. It alone should cause any thinking person to rise up!
This is not a battle between “progressives” and “religious conservatives.” More than twenty-five national disability advocacy groups are campaigning vigorously against the further devaluing of human life; they realize their own lives are in jeopardy.
God has a heart for the weak and vulnerable. He has a heart for the unborn. He tells us in Psalm 82:3 to “Defend the cause of the weak and fatherless; maintain the rights of the poor and oppressed. Rescue the weak and needy; deliver them from the hand of the wicked.” Look at those verbs: defend, maintain, rescue, and deliver. They are clarion calls for action.
The media and the medical community, the biotech industry and the “progressives” try to disguise their policies with rosebush arguments and wildflower words. But they can’t cover up the hard, naked fact. “There is a way that seems right to a man, but in the end it leads to death” (Proverbs 14:12).
And not just the death of those people who are patented! It’ll be the death of humanity.
JONI