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“For several decades, even centuries, people have thought through the ramifications of being able to modify genetic material, in essence, to be able to have “”designer babies.”” Gene therapy is nothing of this sort. Gene therapy as it’s currently been formulated is focused on treatment of rare conditions that cause suffering and human disease through single gene mutations. There is a concern conceptually, as gene therapy progresses, that the line between what constitutes a disability or a disorder or a disease and what is just a normal amount of variation can become blurred. And so traits like weight and height and so on could be things that people try to modify. But the current state of affairs is that all of the research and all of the focus has been on trying to use gene therapy to treat diseases that we know causes a great deal of human suffering.
So that’s the first big ethical issue in the area of gene therapy as many ethicists have written about it. The second one that we think about a lot is cost. So with the most recent gene therapy being approved and launched on the market at over $2 million and list price, the cost of these therapies means that their use and administration to patients is restricted, really to those either who are from the most wealthy countries and have the best coverage. That’s the second big area of ethical concern dilemma, is how to extend these therapies, even though the conditions are rare, there are babies born with spinal muscular atrophy around the globe. And the ethical issue and dilemma is, how do we get treatment to them when the cost is so high? Even at a fraction of the cost, it still is not attainable for many across the world.”
