Human Genome Research: Exploration or Exploitation?
Bill Cutrer, M.D., and Sandra Glahn, Th.M.
On June 26, 2001, President Clinton, Prime Minister Blair, and both of the key scientists involved in the research announced the completion of the initial sequencing of the human genome. In our last column, we explored the “up” side of this great accomplishment.
But what about the cautions? What are the dangers? As far as is publicly known, the ethical principles have all been upheld in the process so far—no life loss, no harm done, and enormous potential for good. But that is not to say the potential for evil is not present.
Making Private Information Public
Here’s the “down” side of all this research: we are now positioned to predict more accurately those persons who are at high risks for developing genetic disorders. That’s good, isn’t it? Yes, because it can direct them to prevention or treatment. But here’s the problem. Unfortunately, a person diagnosed as being “at risk” genetically might also find his or her diagnosis economically and socially “risky” before any signs of disease develop. Depending on who has access to personal genetic information, businesses could discriminate by refusing to hire someone with a higher-than-average risk for cancer or debilitating disease. An insurance company could easily deny coverage to the very group of people most needing their financial resources. Corporate greed has motivated the discrimination that has already taken place for some with currently diagnosable genetic disorders. Insurance companies now disqualify people for “pre-existing conditions,” but presently patients have at least shown some sign of disease before being denied coverage. In the future with genomic diagnosis, we could see people denied coverage years before symptoms appear.
What does this mean?
It tells us that, while we can be optimistic about the potential for impacting certain diseases, we must be vigilant to set limits on how others can use this information. Writing from the Center for Bioethics and Human Dignity, Ben Mitchell, Ph.D., observed, “We have no national policy which prohibits discrimination against persons on the basis of genetic code. Gene therapy without appropriate protocols of informed consent and research protection has already resulted in the loss of the life of young Jesse Gelsinger. Must others die needlessly?”
Making Public Information Private
In addition, we need to support and encourage laws that keep genome research in the easily accessible public domain, rather than letting it be dominated by the private sector. Unfortunately, people are already “buying up” sites on the genome, as though they are something to be owned. The rationale is that if one of these purchased spots is identified as the key location for a certain cancer, the “owner” will have an overnight financial windfall.
The heads of both United States and British governments have said the human genome should not be the property of any private interest. Yet the president of Celera Genomic has linked his work on human gene sequencing to his company’s financial interests. Should science serve mankind or should it be done in service to a few elite humans? Again, it comes back to greed. First Timothy 6:10 reminds us, “The love of money is a root of all kinds of evil.”
Looking even further down the road, how would genetic information affect social interaction and marriage? If you knew the genome of your prospective mate, and thus for your offspring—potential for such diseases as cancer, diabetes , and Alzheimer’s—would we use this information to keep our “family gene pool” strong? Could the state require a blood test to be sure folks with recessive genes don’t marry? Would a certain type of genome be required to fill government posts? The possibilities are endless.
What should we do? We should not oppose the research itself just because the potential for evil exists. Rather, we need to stay informed and speak up to ensure that ethical and legal guidelines are in place before the technology is readily available. We already have laws against certain kinds of discrimination (age, race, gender, religious); we need to add “possibility of genetic disorder” to the list. Recognizing the potential for good and evil in all medical research, we must be vigilant to protect those who could easily be exploited by our newly gained knowledge. And we need to assure that the knowledge that could benefit the entire human race does not become the product of a few private investors.
