A few passersby denounced the owners as Nazis. But most people entered the store ready to plunk down their credit cards to change the genetic inheritance of their families. Shoppers initially requested one trait they wanted changed, but once they got into it, their shopping lists grew. Since Gene Genies offered people not only human genes, but ones from animals and plants, one man surprised everyone by asking for the survivability of a cockroach.
The shop’s owners, T. Kim-Trang Tran and Karl S. Mihail, were thrilled at the success of their endeavor, particularly since none of the services they were advertising were yet available. Despite their lab coats, they were not scientists, but artists striving to serve as our moral conscience. “We’re generating the future now in our art and giving people the chance to make decisions before the services actually become available,” said one of them. (Their exhibit now exists in virtual reality at www.genegenies.com.)
Now that scientists have drafted a sequence of about 3 billion base pairs that make up our genetic constitution, we all face a momentous task: Trying to imagine that future and determine when, how, and by whom this new genetic knowledge should be used. It’s a rocky road ahead, for in the very process of attempting to understand what makes us human, we might lose our humanity.
The dizzying assortment of available genetic services raises challenges for us as individuals and as members of a larger community. In the next few years, each of us will face the question of whether we should undergo genetic testing. In some instances, as hundreds of people have already found, we may be tested without our knowledge or consent. For the good of their business, insurers, employers, or courts have already begun making decisions about us based on our genes.
At one level, genetic technologies raise questions similar to those of other medical technologies—about quality, access, individual rights. But there seems to be something profoundly different as we stand at a junction where all of biology looks like a set of building blocks that can be manipulated by entrepreneurial will.
People are starting to use information about genetic risks and the availability of genetic diagnostic and treatment services to make major life decisions: where to live, what type of job to take, what type of insurance to purchase, even whether to bear a child. Scientists and doctors already have begun recommending parents whose children have a genetic propensity toward skin cancer to quit their jobs and move to a rainy city like Seattle.
Knowledge of Good and Evil
Genetic testing generates information unparalleled in scope compared to other areas of medicine. People can learn that, decades later, they will suffer from an untreatable disorder, that they have an increased risk of cancer, or that their children have a one-in-four chance of dying of a serious disease. This knowledge has a profound effect on people’s lives by challenging their self-image, by altering their cultural and social identity, by changing their relationships with family and friends, and by causing them to think about their life, health, and responsibilities in new ways.Gene Civilities
Genetic testing also reveals genetic risk information about a person’s relatives. As a result, family relationships are changing. A parent and a child have half their genes in common, as do siblings. Cousins share one-quarter of their genes, as do grandparents and grandchildren. Family bonds raise new and profound questions of “gen-etiquette,” questions of the moral obligations to relatives that may be raised by the acquisition and disclosure of genetic information. If a woman learns she has a genetic mutation predisposing her to breast cancer, does she have a moral or even a legal duty to share that information with her sister? What about an estranged cousin?Testing children raises difficult questions about whether parents should be able to learn genetic information about their children and whether it will cause them to treat the children differently. Genetic testing has become routine during pregnancy. Some parents set admission standards for birth—using genetic testing and abortion if the baby is of the “wrong” sex. Other parents seek genetic testing of existing children. A few years ago, a mother entered a testing facility with her two young sons. “I’d like you to test my sons for Huntington’s disease,” she said. “I only have enough money to send one to college.”
As technology evolves, parents-to-be will have even more control of the traits of their offspring. In various surveys, some potential parents have already declared they would use genetic engineering on their children to make them smarter, to upgrade them physically, or to determine their sexual orientation. Those who want to cash in on meeting these desires are already lining up: With around 4 million births per year in the United States, a market for prebirth genetic enhancement may be almost as large as that for Prozac or Viagra.
Should parents be able to buy height-enhancing genes for their embryos? Will that be viewed like cheating in sports, or more like enrolling your child for private tennis lessons? Should the government be allowed to vaccinate embryos with certain genes? And what about putting genes in human embryos for traits people never had before, like the running speed of a cheetah or the ability to photosynthesize? Already lawyers are asking whether constitutional rights extend to humans who would have extensive animal or plant genes. One lawyer/doctor who was asked when constitutional rights apply said, “If it walks like a man, quacks like a man, and photosynthesizes like a man, it is a man.” The very boundaries of what is human are being changed by technology.
Princeton biologist Lee Silver paints a chilling picture of our genetic future in his book Remaking Eden (Avon, 1998). He predicts that since the rich will be able to afford genetic enhancement and the poor will not, humans will actually evolve into two different species—the GenRich and the Naturals. These two groups will be so distinct biologically that they will not be able to produce children together, Silver writes.
We’re at a pivotal point in history. Reproduction is being turned into a more mechanical form of production, and people in settings ranging from the family to the workplace are beginning to be treated as no more than the sum of their genes. We’re the generation that will decide whether that trend will be hastened or derailed.
Genetic Battles
We need to have control of who has access to genetic information about us. We need to be informed about the consequences of genetic testing before we are tested, and we need to have the opportunity to refuse. Currently this is not the case with workers, pregnant women and others who have been genetically tested without their knowledge or informed consent.Many diseases can be diagnosed through genetic testing, thanks to the Human Genome Project (HGP), but few can be treated successfully. Consequently, some health insurance carriers have refused to insure healthy people whose genes indicate they might get cancer or some other serious disease 10 to 20 years hence. A medical school refused to admit a student who was at a risk for Huntington’s disease, an untreatable genetic disease that is generally fatal by age 50. The school said it did not want to “waste resources” by training a doctor who could die young.
Employment relationships may be changed by genetic testing as well. Employers may assign workers to tasks not on the basis of interests or talents, but on the results of genetic testing. The manager with a gene linked to alcoholism or other risk-taking behavior may be denied a promotion, regardless of behavior. Rather than clean up the workplace, employers may choose workers with healthy genes who can survive on-site toxins.
Some employers collect our genetic information. A small percentage of them admit to basing their hiring and promotion decisions on that information. Only a few states prohibit employment discrimination based on family history. On the federal level, the Americans with Disabilities Act prohibits employers with 15 or more employees from refusing to hire or otherwise discriminating against people with disabilities or who are regarded as having disabilities (unless the disability impedes their ability to do the job).
Virtually all societal decision-makers, from mortgage lenders to courts, from health insurers to tenure committees, could use genetic information in their deliberations. In a 1994 South Carolina case, Berkeley County Department of Social Services v. David Galley and Kimberly Galley, a judge actually ordered Huntington’s disease genetic testing on a woman (at the instigation of her ex-husband and despite her opposition to testing) in order to terminate her parental rights. This may foreshadow custody cases in which divorcing spouses both seek genetic testing on the other to determine which is less likely to get cancer or heart disease and thus likely to live longer.
Copyright Genes
We must ask lawmakers to sanction another social and legal change. As the Chicago Tribune pointed out in an editorial on September 16, 1999, we need to “liberate” genes by overturning gene patents. Patenting genes violates basic notions of justice and interferes with the ultimate goal of the HGP: finding cures for genetic diseases.When the HGP proposed in 1987 to spend $3 billion of taxpayer money identifying all human genes, most biological scientists had no expectation they would actually own the genes they studied. Intellectual-property law prohibits patenting a product of nature. It also prohibits patenting a formula, like E=mc2. Genes seemed to be both.
Because gene patenting seemed inconceivable at that time, Nobel laureate Walter Gilbert announced a scheme to copyright DNA, just as you would a book. His plot was to own the sequence of CATTAGTA and charge a fee for access to information about which sequences corresponded with which genes. The idea went nowhere. The notion of an individual having dominion over the common language of genes seemed overreaching and ludicrous. Then, in a controversial move, the U.S. Patent and Trademark Office began to allow researchers to patent the genes they discovered. The researcher writes out a sequence, describes what it does, and ships it to the patent office. For the next 20 years, the researcher has control over anything done with the gene. The payoff for these gene patents can be huge. Amgen Inc.’s patent related to the human erythropoietin gene (which codes for a protein needed by kidney-disease patients) is worth more than $1.5 billion a year because a genetically engineered treatment can be made from it.
The official goals of the patent system in the biotechnology sector are to encourage competition in the development of medical tests and treatment and to pay for the research. But, ironically, the secrecy and conflicts of interest produced by gene patenting may actually prevent product development. When Mark H. Skolnick discovered the breast-cancer gene, the company he founded, Myriad Genetics, patented it. Because of the patent, no one can perform a genetic test for a mutation in the breast-cancer gene (even if a scientist discovers it independently), and no one can develop or employ a gene therapy for breast cancer without Myriad’s permission. Myriad can charge whatever it wants to doctors or scientists who test for the breast-cancer gene. Some companies have set the royalty for their genetic tests so high that many patients cannot afford to take them.
Researchers who want to develop cheaper or better tests or treatments for diseases whose genes have been patented may be prevented by the patent-holder from doing so. Patients who paid billions of dollars for the cost of discovering genes through the taxpayer-funded HGP may not be able to partake of its benefits.
The Immorality of Gene Licensing
To find genes, physicians and researchers rely on large numbers of patients and their families to supply the tissue. Laws provide that physicians have a fiduciary relationship with their patients and should avoid conflicts of interest. For example, there are legal prohibitions against fee-splitting and kickbacks. Yet researchers searching for commercially valuable genes and geneticists who get royalties from genetic tests both have a financial conflict of interest with their patients.The new commercial focus of molecular biologists has fundamentally changed science and medicine. Scientists with access to biological materials from patients are now less likely to give samples of those materials to other researchers. Because of new laws that let researchers “own” and commercialize the genes they locate, all of us have become living gold mines for the doctors who harvest our tissue.
Today the promise of genetics is everywhere. Much fanfare accompanies each genetic discovery, but less attention is focused on how we will use the knowledge gained through genetic testing. When an article in The Journal of the American Medical Association heralded the discovery (later disputed) of a genetic marker for alcoholism, 140 newspapers and magazines ran articles the next week declaring what a boon and advance that was. Not a single article addressed the issue of what we would actually do if we identified individuals with a genetic propensity to alcoholism. Would we forbid an 18-year-old with the gene from attending a party college? Would we refuse to promote a person with the gene to bank vice president?
How can we address the abuses of genetics? Start by carefully reading all consent forms. Ask your doctors or geneticists what policies they have regarding testing and research. Refuse to allow your blood samples to be used for research until gene patenting is banned. Be on the alert for research uses if you are a patient at a teaching hospital. Contact your insurer and employer to see if they have any written policies regarding genetic testing. Ask your legislators to put new policies in place.
The vexing question of how the fruits of genetic research should be used now guides my own work on creating legal policies for new genetic technologies. The task of developing policy in this field is similar to that of writing science fiction. What will our society look like if one policy approach is chosen versus another? Scientists may be mapping the genome, but it will be up to people like us—and the legislators we elect—to determine where that map will lead.
Lori B. Andrews is the former chairwoman of the ethics advisory group to the Human Genome Project. She is the director of the Institute for Science, Law, and Technology at the Illinois Institute of Technology and the author of Future Perfect: Confronting Decisions about Genetics (Columbia University Press, 2001).
Copyright © 2001 Christianity Today. Click for reprint information.
Related Elsewhere
Additional “Biotech Revolution” articles on our site include:Manipulating the Linguistic Code | Religious language falling into the hands of scientists can be a fearful thing. (Oct. 3, 2001)
Times Fifty | Can a clone be an individual? A short story. (Oct. 2, 2001)
The Genome Doctor | An Interview with Francis Collins. (Oct. 1, 2001)
A Matter of Life and Death | Why shouldn’t we use our embryos and genes to make our lives better? The world awaits a Christian answer. (Sept. 28, 2001)
Wanna Buy a Bioethicist? | Some corporations have discovered that bioethics makes good public relations. A Christianity Today Editorial. (Sept. 28, 2001)
T. Kim-Trang Tran and Karl S. Mihail have posted their Gene Genies Worldwide art exhibit online.
The U.S. Human Genome Project (HGP) is the national coordinated effort to characterize human genetic material by determining the complete sequence of the DNA in the human genome. View timeline and history for background information on the project.
The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have devoted 3% to 5% of their annual Human Genome Program budgets toward studying the ethical, legal, and social issues surrounding availability of genetic information
Do No Harm, the Coalition of Americans for Research Ethics, is a national coalition of researchers, bioethicists, and others dedicated to the promotion of scientific research and health care which does no harm to human life.
The Center for Bioethics and Human Dignity helps individuals and organizations address the pressing bioethical challenges of our day and recently looked at the ethics of bioethics.
The U.S. National Bioethics Advisory Commission site offers reports and basic information.
In 1997, Christianity Today’s sister publication Christian Reader took a “High Dive into the Gene Pool.”
Lori B. Andrews’s books Future Perfect, The Clone Age, and Body Bazaar are available at Amazon.com.
Previous Christianity Today coverage of bioethics includes:
Two Cheers | President Bush’s stem-cell decision is better than the fatal cure many sought. (August 10, 2001)
House Backs Human Cloning Ban | Scientists say they’ll go ahead anyway. (August 27, 2001)
Embryos Split Prolifers | Bush decision pleases some, keeps door open for disputed research. (August 27, 2001)
House of Lords Legalizes Human Embryo Cloning | Religious leaders’ protests go unheeded by lawmakers. (Feb. 2, 2001)
Britain Debates Cloning of Human Embryos | Scientists want steady stream of stem cells for “therapeutic” purposes. (Nov. 22, 2000)
Tissue of Lies? | Latest stem-cell research shows no urgent need to destroy human embryos for the cause of science. (Sept. 28, 2000)
Beyond the Impasse to What? | Stem-cell research may not need human embryos after all. But why are we researching in the first place? (Aug. 18, 2000)
Thus Spoke Superman | Troubling language frames the stem-cell debate. (June 13, 2000)
New Stem-Cell Research Guidelines Criticized | NIH guidelines skirt ethical issues about embryo destruction, charge bioethicists. (Feb. 7, 2000)
Human Embryo Research Resisted (August 9, 1999)
Editorial: The Biotech Temptation (July 12, 1999)
Embryo Research Contested (May 24, 1999)
Biotech Babies (December 7, 1998)
Stop Cloning Around (April 27, 1997)
