Selecting Against Disease
By: Urmila Ramakrishnan
Although we may not have control over the end of the world, genetic counseling and selection will give us power to manipulate the quality and extent of individual lives.
In a recent British study, scientists were able to screen for a mutation called BRCA that significantly increases your chances of getting breast cancer. The risk goes from one in 12, for the average person, to seven in 10 for people with this mutation. Screening for and selecting against this mutation could help eliminate breast cancer in future family members who would otherwise carry the faulty mutation and its associated risks.
Within the last 10 years, the use of the human genome enabled scientists of all fields to understand the human being in ways beyond our science fiction imaginations.
Dr. Ronald Green, a Dartmouth College bioethicist, thinks genetics should be used to increase the quality of life, versus the longevity. He describes it like this: Picture a graph with an x-axis, depicting longevity, and the y-axis, representing the current quality of life. It will have a rising and descending hill, with the quality going down as you age. Green sees the graph of the future as a rectangle, where the quality of life stays the same until you die of old age.
“It’s terrible to have a loss of personality, like Alzheimer’s and dementia,” he says. Women shouldn’t have to live lives with breast cancer. The ideal is that everyone should die with a good quality (of life) to the end. Beyond that, if it’s low quality, why extend it with greater longevity?”
Genetics is changing rapidly, but society’s views haven’t caught up with the times. History has a way of staying with us. The term genetic selection brings back memories of eugenics, the Holocaust, and science fiction novels of the 1920s. These provoke images of mass exterminations in the quest to create the “perfect human.” The focus of genetics today is on making human life better and more optimal.
Though we are far from living without disease, research indicates what’s on the cusp: the completed cancer genome looks at what happens to tumors when they mutate; Cell Free Fetal DNA screens for genetic disease as early as seven weeks into pregnancy; reprogramming adult skin cells back into something called a pluripotent cell, or stem cells and for gender selection, just to name a few.
Genetic research today is still in its infancy, says Marcy Darnovsky, associate executive director for the Center for Genetics and Society. It may still take decades to see physical applications of research presently being done. So when is it time to draw the hypothetical line between innovation and something out of an Aldous Huxley novel?
“I have no problem with preventing the births of people who have diseases that are fatal,” Darnovsky says. “Once you start moving into less serious diseases, or even things that don’t have medical implications, I think it’s fair to call eugenics. It leads to a world of greater inequality, that’s a terrible idea and a dangerous idea.”