In 2008, a deaf U.K. couple wanted to use genetic selection to make sure their baby would be deaf. They argued that deafness is a culture, not a disability, and they took the claim all the way to Parliament, which was considering fertility legislation that would allow or deny their fate. If you were a member of Parliament, would you be in favor of it?
This was the question moderator Jacob Appel posed at the Black Mountain Instutute’s Sept. 19 bioethics discussion at UNLV. A few audience members hesitantly raised their hands affirming yes, they would. Two panelists, Harriet Washington and David Ewing Duncan (pictured), then said what such a decision would mean: Giving people the ability not only to create a designer baby, but also to inflict what some consider harm on the child by preemptively removing its hearing.
The panelists—all accomplished bioethics scholars and writers—offered plenty of questions to keep us awake at night:
Is there a moral line between using genetics to improve health and using it to manipulate populations? If so, who draws it and how? Can anyone control access to and use of genetic information?
Whether you’re preselecting for blue eyes or for the lack of a breast-cancer gene, Washington said, the act of selection creates a superior class and an inferior one: those who don’t have access to the selective process. The direct-to-consumer genetic tests being marketed by companies such as 23andMe, she said, could also open a Pandora’s Box, giving buyers potentially inaccurate information they can’t understand. And if the information in such tests becomes known, it affects not only those who choose to undergo them, but also their family members. Sometimes this could be a positive (a test-taker’s brother may realize that he, too, needs to be on the lookout for coronary artery disease) or negative (the brother’s insurance company and employer may learn this, too).
A 2010 Government Accountability Office study of consumer genetic tests found that results were “misleading and of little or no practical use.” But we need to balance that with a Sept. 23 report published in the journal Nature, in which scientists identified four genetically distinct types of cancer that may lead to improved treatments. If anyone could know ahead of time that he’s at risk for the disease, who wouldn’t want to? And yet … where’s that line?
In reality, the train has already left the station—and it makes a stop in Vegas. For instance, the Cleveland Clinic Lou Ruvo Center for Brain Health is cooperating with 23andMe to study the interactions between genomics and Parkinson’s disease. The direct-to-consumer genetic testing company is recruiting local participants—your parents? grandparents?—to contribute their DNA to its research. The time to ask yourself whether you want this information—and whether you believe it makes the world a better place—has come.