Author Bonnie Rochman introduces and explains how genetic technology can shape future generations
The technology is being perfected that can design future humans, but before that happens Bonnie Rochman wants to talk it over.
The tools of that technology produce beneficial outcomes such as identifying diseases that are treatable if detected early through genetic screening of newborns. Some day, similar tools might make real the fantasies of science-fiction writers — building human DNA from chemicals to produce something (human?) no virus can harm.
But some day they could be used to destroy humans. Killer mosquitoes, anyone?
The author of “The Gene Machine” will speak in conversation with Julie Metzger at 7:30 p.m. Tuesday, Feb. 28, at Town Hall; $5 (206-652-4255 or townhallseattle.org).
Rochman, a former Time magazine health and medicine columnist, introduces and explains these tools in her book “The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids — and the Kids We Have” (Scientific American/ Farrar, Straus and Giroux, 288 pp., $26).
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She also delves into discussions well along among geneticists, physicians and other scientists about the benefits, pitfalls and dangers of these genetic advances. For the nonscientist who wants to catch up and join in, the book is an excellent starting point.
Newborn genetic screening has been around since 1963 and is now common, although many parents may be unaware of it, Rochman writes. Since the ’60s, the ability to look into the genetic makeup of the unborn — even the unconceived — has advanced rapidly. Preimplantation genetic diagnosis combined with in vitro fertilization allows perspective parents to choose embryos that are free of particular genetic mutations passed down from ancestors.
Chromosomal microarray analysis can find “missing or extra fragments of genetic material” that may or may not indicate a potential disease. For anyone on a “diagnostic odyssey” searching for an explanation — for a child’s failure to thrive, for instance — microarray can be a godsend. But given the possibility of unclear results, such testing may result in unneeded anxiety for parents and a growing child.
Genome sequencing sorts through all 19,000 genes on a person’s 46 chromosomes and can bury them in data about the potential for disease. Rochman repeatedly raises the question of how much information is too much information for parents to receive. Do they and their potential child have a right to an “open future,” one where the prospect of an identified disease does not lurk in the years ahead, especially if there is no treatment?
Rochman also examines the ethical issues these tools raise concerning abortion and eugenics. Genetic knowledge might increase requests for abortions at a time when many states are passing laws to make that procedure more difficult to attain. The choice to have an abortion may seem justified to avoid a baby’s suffering and early death.
But what about cystic fibrosis? It can be discovered through genetic screening, but how severely the disease will affect the child cannot be determined. As one scientist asks: Should a fetus be aborted because a child with a milder form of the disease could not finish a marathon?
There’s also the question of whether these tools should be used to design a “better” human for the future. Picking among embryos may not be as ghastly as forced sterilization and death camps, the form eugenics took in Hitler’s Nazi Germany, but choosing to have “designer babies” may have the same end in mind.
Rochman has found noted and well-spoken ethicists, scientists and genetic researchers who clearly articulate the pros and cons of the issues surrounding genetic screening, testing and treatments.
“The Gene Machine” is well researched and written as a helpful guide on the choices potential parents may be called upon to make. It can also help guide society out of the ethical thickets planted by this advancing science.