Imagine a world in which doctors could analyze the DNA of cancer patients’ tumors and tailor treatment regimens to them, increasing effectiveness and decreasing side effects. Imagine a world in which scientists could analyze a sample of your DNA — taken, perhaps, from a simple swab inside your cheek — and know if you have a predisposition to heart disease or breast cancer, and explain what steps you could take to minimize the risk.
You don’t really have to imagine such a world; it’s already here, and its benefits are becoming more accessible all the time. Companies have sprung up allowing people to have their own genes sequenced, without any input from doctors or genetic counselors, and some people in the field are projecting that the price could fall to about $1,000 in a matter of months.
Devaluing some lives
But a little knowledge is a dangerous thing, ethicists say, and people who are considering finding out what their genome says need to think seriously about what that information will tell them, and how they and other people might use it.
|A bio technician demonstrates the beginning of the sequencing procedure in a laboratory at the J. Craig Venter Institute in Rockville, Md., in this 2010 photo. Reuters photo by Larry Downing
“One of the first things we have to be careful about is this idea that we are our DNA,” said Jesuit Father Kevin T. FitzGerald. “It’s a kind of genetic reductionism. But we are so much more than that.”
Father FitzGerald is a founding member of Do No Harm, a member of the ethics committee for the March of Dimes, and a member of the American Association for the Advancement of Science Program of Dialogue on Science, Ethics, and Religion. Additionally, he served as a member of the Department of Health and Human Service’s Secretary’s Advisory Committee on Genetics, Health, and Society until 2009.
The important thing, he said, is to remember that all human lives have value, that we all have genetic flaws, and the best way to use genetic information is to help each person live the best life he or she can.
“There is no perfect genome, and there are going to be some significant surprises, some things we didn’t know about ourselves,” Father FitzGerald said. “Everybody has genetic flaws. It just depends on how they become manifest in the person’s life.”
One big fear, he said, is that genetic tests will increasingly be used to determine whose life is worth living at all.
“They now have the ability to sequence the genome of a fetus while it is the womb of the mother, by just drawing blood from the mom,” Father FitzGerald said. “If you’re looking for something wrong in the genome, of course you’ll find it.”
But genes aren’t necessarily destiny, and just because someone carries genes that indicate certain problems, in most cases, there are no guarantees that he or she will develop those problems, he said.
Even diseases that are thought of as single-gene diseases — say, early-onset Alzheimer’s disease or Huntington’s disease — aren’t a sure thing, he said. Even if geneticists know that everyone with the disease has the same gene, they don’t know whether there are people walking around with the gene who never develop the disease, he said. What’s more, especially in the case of a fetus or a young child, there could be effective treatments developed before the disease ever manifests itself.
“If someone says, ‘I can’t handle having a child with that,’ well, you don’t really know what’s going to happen,” Father FitzGerald said. “If you say, ‘I can’t handle having a child with the possibility of that,’ then you probably shouldn’t be having children, because there are always possibilities of bad things happening.”
He advised caution when it comes to trying to change someone’s genes.
“There is that desire to go in and fix what is wrong,” Father FitzGerald said. “We’ve got to fix it, and make it normal. Well, what’s normal? What differences are better than other differences? Does it matter what the other genes are?”
Father FitzGerald is also wary of “direct-to-consumer” testing companies that advertise their services to the public and provide results without going through a doctor or genetic counselor.
“People have a right to know, but people have a right to know what they are actually getting,” he said. “A company trying to sell its services isn’t going to say, ‘Well, this isn’t really of much use to you.’ Even the experts don’t know what this all means yet.”
Hearing bad news
Direct-to-consumer testing also worries Franciscan Father Thomas Nairn, senior director of ethics for the Catholic Health Association, because many people will get bad news, and have no support or guidance in processing it.
Father Nairn said that it’s generally a good thing when medical services that were once only available to the rich become available to the poor as well, but he noted that $1,000 for gene sequencing is still not accessible to all. And he worried about the quality of labs that offer gene sequencing at cut-rate prices.
“How accurate would the cheaper genomic test be?” he asked. “It might tell people they have a problem when they don’t, or that they don’t have a problem when they do. A cheaper test might be less accurate.”
For other people, people for whom the price tag is not a hurdle, the temptation might be to get their genes sequenced almost recreationally, on a lark. Those people might not be prepared for the adverse results they will find — especially if they learn they are likely to develop a life-threatening disease.
“That knowledge needs some sort of counseling,” Father Nairn said.
How information is used
Father Nairn also worried about other possibilities, such as people having other people’s DNA sequenced surreptitiously, or insurance companies using genetic information to discriminate against some people. While the Affordable Care Act would prevent health insurance companies from denying coverage based on genetic information, there is nothing preventing companies offering life, disability or long-term care insurance from doing so.
That’s one possibility raised by Father Tad Pacholczyk, director of education for the National Catholic Bioethics Center.
“Genome sequencing represents a morally neutral activity,” Father Pacholczyk said in an email. “Moral concerns arise depending on how the obtained information is subsequently utilized. Will it be used to discriminate against patients of a particular profile who belong to a ‘high risk’ group by insurance companies? If so, this would represent an unjust and improper utilization of the information. Would the information be used to help people choose particular steps toward a healthier lifestyle, if, for example, their genetic information indicated an elevated risk of heart disease? If so, this would represent a morally praiseworthy use of the technology.”
Father FitzGerald said the question isn’t whether economically accessible gene sequencing is good or bad, it’s where we decide to go from here.
“It’s a challenging time, but it’s a time of great opportunity,” he said. “There are many practical uses. But what are we going to use it for? Are we going to fall into an erroneous way of thinking?”
Michelle Martin writes from Illinois.