Chapter 9: The Color Of Your Genes
“Joni, in the last twenty years, we have seen technological development double — double since the Iron Age!”
My friend, a graduate from MIT, knew what he was talking about.
“What’s more, it’ll double again in the next few years.” That, I knew. One year ago I purchased a new computer with 28.6 gigabytes of storage and enough power to run a spread sheet, send email, do word processing, navigate the Internet, and look up Bible texts, all at the same time, using my voice activation dictating program. That was a year ago. Yesterday when I got my voice activation upgrade, I was told I needed a new computer with more power, speed, and memory. (It’s a good thing prices keep coming down.)
What an amazing world we live in! I wish the prophet Daniel could have lived to see this day. Then again, maybe he did. Perhaps he saw CNN in some prophetic vision and could only watch in wide-eyed wonder at all the technological advancements. Maybe his brain could absorb only so much and he turned away just in time to hear God say, “But thou, O Daniel, shut up the words, and seal the book, even to the time of the end: many shall run to and fro, and knowledge shall be increased” (Daniel 12:4 KJV).
Knowledge is flying at us from right and left. We grasp something new (or purchase a computer) only to find it obsolete a few months later. Do the proliferation of knowledge and the jet-blast speed of technological changes mean we are close to the time of the end?
I don’t know, but it makes me look at the time when human knowledge was barely budding. Genesis 2:9 says, “The LORD God made all kinds of trees grow out of the ground — trees that were pleasing to the eye and good for food. In the middle of the garden were the tree of life and the tree of the knowledge of good and evil.” We all know what happened next. A piece of fruit got plucked from the tree of the knowledge of good and evil, stripping away man’s innocence, and he was left bearing the responsibilities of knowledge. Knowledge of what was good and evil.
Little wonder God wasted no time in taking action. In Genesis chapter 3, “The LORD God said, ‘The man has now become like one of us, knowing good and evil. He must not be allowed to reach out his hand and take also from the tree of life and eat, and live forever.’ So the LORD God banished him from the Garden of Eden to work the ground from which he had been taken. After he drove the man out, he placed on the east side of the Garden of Eden cherubim and a flaming sword flashing back and forth to guard the way to the tree of life” (v. 22 – 24).
Some people think God was unkind in banishing Adam and Eve from the garden. Some see the cherubim with the flaming sword as adding insult to injury. Why would God make such a big deal about the tree of life?
How merciful of God to keep sin-sick man from eating of the tree of life! Had Adam and Eve been able to make their way back into the garden, mankind in his sad and sorry state would have lived forever. Who wants to live in a body of sin and death? Not me.
From the first time the word knowledge is used in the Bible, it clearly carries a sobering responsibility. It is a double-edged sword. Knowledge has two sides: good . . . and evil. It’s been that way since before the Iron Age. And it remains true today.
“The tree of the knowledge of good and evil” has a direct bearing on all that we’ve covered in this book. Because for every technical advancement for good, there is always an accompanying potential for evil — in everything from splitting atoms to the color of your genes.
What of the future? Daniel the prophet declares to us that at “the time of the end: many shall run to and fro, and knowledge shall be increased.” My computer guy will tell you that knowledge is increasing at breakneck speed. This is good . . . and not so good. As scientific knowledge continues to grow, we need Christians who will go before us and help lay the framework for prudent decision making. When it comes to grappling with the essence of all that it means to be human, when it comes to manipulating the tiniest of genes on a thread of DNA, let’s remember we are touching a very peculiar fruit; not an apple hanging on a tree in a garden . . .
. . . but the apple of God’s eye.
JONI
Now that eugenic abortion has become routine, along with the eugenic screening of in vitro embryos, it is no surprise that the eugenic pressures are mounting for humans in later stages in life.
Eugenics has two sides. People with weak genes find themselves at a further disadvantage, while people with strong genes get special privileges. The aim is to discourage some and encourage the others.
Abortion has made eugenic killing widespread and legal in many countries. To be fair to some pro-choice feminists, the more conscientious people who favor abortion as a woman’s right are often alarmed by its use to destroy the handicapped and genetically “inferior.” The pressure is on to take the lives of “inferior” babies who make it through pregnancy to birth early in life. Princeton’s infamous bioethics professor, Peter Singer, has argued that parents should have the right to take the life of a born handicapped infant.
On the other hand, eugenics seeks to encourage people with “good” genes. The growing market for eggs and sperm from “superior” women and men shows one way this eugenic initiative is moving forward.
Meanwhile, what about those who are already born, who have not been killed and who have genetic problems? In fact, we all have genetic abnormalities of one kind or another; but what about those for whom they could be serious? Who should know, and what should they be able to do with what they know?
A GREAT MOVIE
We have already talked about Gattaca. Like Mary Shelley’s novel Frankenstein from two centuries ago, and Aldous Huxley’s Brave New World, it’s a masterpiece that tells a story about the future so that we look at things in the present in a very different way. We already have some of the technology featured in the movie; some is not too far off. It catches our attention in part by a retro feel that mingles with the futurist aspects of the story — the use of sepia tones and cars that look old-fashioned even as they run on electricity.
Its theme tackles the biggest question we face today: what do we do with our newfound knowledge of genetics? Should we employ it to design and “perfect” our children? Do we want to know, as a baby is born, the diseases he or she likely will suffer from, and how long the individual is likely to live? Should we be free to find out the most intimate genetic secrets of anyone we wish? What should employers do with this information?
These are vital questions, and they are for today, not tomorrow. Even now, several bills on Capitol Hill seek to outlaw “genetic discrimination.” President Bush has made speeches against it. But coupled with the push for a new eugenics to give us “designer babies” and a focus on screening out diseased or “inferior” embryos and fetuses, its implications are not easy.
Gattaca raises the key questions. Should we assign those whom we know to have weak or defective genes to menial tasks? Should we give those with “good” genes the big breaks? It may sound reasonable enough. But, if it does, we have begun to buy into eugenics. Eugenics always sounds reasonable . . . at first. Perhaps the most profound theme of Gattaca is that people with “superior genes” also suffer in this eugenic world, and perhaps suffer more than those who are genetically weak and of whom expectations are correspondingly low (and for whom the movie coins two telling terms: the “in-valid,” and the “de-gene-erate”).
The DVD version features extra scenes, deleted from the original, and right at the end we get a compelling series of frames (that we won’t spoil by describing for you). But you will note, right at the start, a quote from the Old Testament. And while the movie is devoid of religion (it was not made by or for believers), and none of the characters is presented as a model of Christian living, the power of the narrative — as in those two great books by Mary Shelley and Aldous Huxley — is unforgettable. In the face of reductionism and genetic control, what does it mean to be human?
TESTING FOR GENETIC DISEASES
We already confront the challenge of genetic information in the tests that diagnose genetic diseases. In chapter 5 we looked at what this can mean for embryos and fetuses. In the Netherlands, where seriously ill adults and teens can be killed if they request euthanasia, the law is now being extended to babies. According to Tara Schupner, writing on Kansan.com, one Dutch physician, Dr. M. Rietdijk, was quoted as stating that “a baby should be killed whenever some physical or mental defect is discovered before or after birth.”
While no one has yet suggested that newborns with genetic diseases should be killed here in the US, in New York State, for example, it is compulsory to test newborns for genetic diseases. There has been recent debate about extending the number of tests from eleven to four times that number. While these tests may have therapeutic benefits (treatments are available for some genetic diseases ), every test means information goes into someone’s medical record and can be pulled out later for some other purpose. One of the biggest questions we face is how to keep that information private, and who should have access to it.
Pressure to test later in life may be increasing, either from family members or, perhaps, from insurance companies. In one recent study in Australia, financial pressures were cited. If a family has a history of some disease, insurance companies can “load” premiums and make life or medical insurance much more expensive for those known to be at a higher risk of the disease. Someone may decide to be tested to see if they can avoid paying the higher premium. In many countries it is illegal for insurance companies to require such tests, although people may be required to tell insurers if they have had them. The UK, for example, bans the use of such tests by insurance companies.
But it is a complicated issue. If you discover that you have a fatal genetic condition and are likely to die young, you could pick up the phone and immediately insure your life for $10 million. If the insurance company must give you the same premium rates as everyone else, the system will slowly collapse as people will take advantage of it, forcing everyone else to pay (and many of the “healthy” will just stop paying). This example shows how misusing genetic information presents a problem on both sides — the new knowledge can be misused by everybody involved, including the patient. So setting fair public policy as tests become widely available will be complicated, especially in the US, which depends more on private insurance than many other countries.
Clinton on Genetic Discrimination
We must not allow advances in genetics to become the basis of discrimination against any individual or group. We must never allow these discoveries to change the basic belief upon which our government, our society, and our system of ethics is founded — that all of us are created equal, entitled to equal treatment under the law.
PRESIDENT BILL CLINTON
GENES AND JOBS
What about employment? In Gattaca, employment discrimination runs rampant. Though genetic discrimination is technically illegal in the Gattaca world, the law is routinely flouted. The DNA from the envelope in which the application is submitted, or the cup of coffee drunk at an interview, can be analyzed and will reveal the candidate’s genetic secrets as surely as a blood sample.
When Vincent goes to the Gattaca space center for his job interview, he is sent for a urine test. The physician completes the test and congratulates him. “But what about the interview?” he asks. “That was the interview,” the physician dryly responds.
More than one thousand genetic tests are now available. In a recent study, 92 percent of those polled did not believe their employers should have access to the results of genetic tests, and the evidence indicates these concerns are rising. People do not feel confident that such tests will not be used against them by insurers and employers.
Bush on Genetic Discrimination
Genetic discrimination is unfair to workers and their families. It is unjustified. . . . To deny employment or insurance to a healthy person only on a predisposition violates our country’s belief in equal treatment and individual merit.
PRESIDENT GEORGE W. BUSH
Jane Massey Licata, a law professor from Rutgers, recently testified before a House of Representatives committee that patients worried they would lose their health insurance. A representative of the US Chamber of Commerce dismissed her concerns: “Employer collection and misuse of genetic information remains largely confined to the pages of science fiction,” he said. Yet Senator Judd Gregg, usually seen as very pro-business, remained unconvinced. He steered a genetic discrimination bill through the Senate (it passed 95 – 0) and commented to the House committee that he had “heard from a broad range of civil rights, employment, and insurance experts, the overwhelming majority of whom agree that there are gaps in current law with respect to genetic information.”
California’s health insurance protections are stronger than those of many states, and “were enacted during the past 10 years after some patients hit ugly insurance snags,” according to a recent report in the San Jose Mercury News, which tells a cautionary tale: “In 1994 Doris Goldman’s family was one of the first tested for inherited Long QT Syndrome, a dangerous irregular heart rhythm. Her two adult children, Jack and Sharon, had recently died of sudden cardiac arrest. Doctors decided to test Goldman’s relatives, including her grandson Jacob, born five months before her daughter’s death in 1991. The tests revealed that 37 members of Goldman’s family, including Jacob, carried the Long QT gene. When Jacob’s father decided to start his own business, the little boy was denied individual coverage. . . . State lawmakers came to her aid. Jacob’s full insurance was restored in 1996.”
The Start of a Scandal
The first documented cases in health insurance genetic discrimination date back to the 1970s when insurance companies charged African Americans carrying the gene for sickle-cell anemia a higher rate or even refused to provide coverage. Employers then used the information to deny employment, even if the carriers were perfectly healthy at the time and there was no proof that they would in fact develop the disease.
HILLARY AUGUST
A “GENOIST” FUTURE?
Christians need not applaud all the changes of the past half century, but our society has made great strides in tackling some of the evils of discrimination. The civil rights movement offered a vigorous reassertion of the equal dignity of people of all races. Much of what is called feminism has been nothing more than a reminder that women, as well as men, are made in the image of God — a reminder that our culture has needed to hear. The Americans with Disabilities Act marked an enormous milestone on the road to a recognition that the strongest and the weakest are alike persons, and that we should make great efforts to enable those with disabilities to play as full a part in the human community as their gifts and skills let them.
So it’s a sobering thought that as we enter the “biotech century,” a new and especially ugly kind of discrimination is rearing its head, a new “ism” to add to “racism.” In Gattaca it is called “genoism,” and it dehumanizes those with “strong genes” by expecting too much of them, and those with “weak genes” by expecting too little. Alongside the abortion of the handicapped, the prospect of designer babies, the patenting of genes, and (if the biotech industry gets its way) embryos, it is set to take us further down the path to a new eugenics, in which people are treated like things.
It all boils down to the person.
Personhood begins at conception. Many in the stem cell debate argue that an embryo is not a human person until it is “out of the uterus,” while others argue that it is not a human person until it is “in the uterus.” My friend, Christopher Hook of the Mayo Clinic, states, “These arguments based on an individual’s location are feeble attempts to deny what has been accepted by scientists for many generations: human-hood begins with the union of twenty-three chromosomes from the ovum and twenty-three chromosomes from the sperm.”
If people walking around can be discriminated against, then believe me, people like me in wheelchairs can be also. And if people with disabilities suffer from discrimination, then Lord help the tiny person in a woman’s womb! But our society doesn’t ascribe an embryo with the mantle of personhood.
Professor Allen Verhey of Hope College in Holland, Michigan, sees a parallel between the parable of the Good Samaritan and the debate over personhood. “The questions ‘Who is a person?’ and ‘Who is a neighbor?’ both have the same goal — to find out where our moral duties and responsibilities end. Jesus doesn’t give a set of criteria to define who is a neighbor — in the same way, we can’t ‘invent’ a set of criteria to define who is a person.”
Whether you believe the soul inhabits a tiny human embryo — which I’m convinced it does — is almost beside the point. The fact is, it’s human. It’s not a goat or a rat or a chicken embryo. It is human, and each of us began our journey on this planet as one of those embryos. Life, even that small, is owed all the legal and moral protection that any human life enjoys. Life for a person that tiny — especially that tiny — must be protected against discrimination.
JONI