Bonnie Rochman Tests Limits of Ethical Science

A baby reaches for a multicolored DNA mobile on the cover of “The Gene Machine” by Bonnie Rochman — complementary imagery to the complicated discussion presented inside about the effects of genetic screening on parents, decisions and children.

Providing a comprehensive look at the history and debate surrounding genetic technologies, Rochman highlights a diverse array of personal narratives from families and doctors who have received or given the results of genetic testing.

While Rochman emphasizes the prevalence of certain genetic disorders within the Jewish community — she experienced testing and worrying during her pregnancies — she broadens her discussion to be accessible to any parent thinking about genetic technologies while planning a family.

Rochman, who is speaking Nov. 6 at the Book Festival of the Marcus Jewish Community Center, recognizes the dark history with which genetic screening sometimes is associated. She points to eugenics as a difficult measure to which genetic testing is compared. She grapples with the “slippery slope” argument that often arises in discussions of genetic screening and ponders where the line should be drawn as to which genetic abnormalities should be prevented and which should not even be screened for.

The Gene Machine
By Bonnie Rochman
Scientific America/Farrar, Straus and Giroux, 288 pages, $26

Further, Rochman acknowledges the relevance and progress of the disability rights movement. She offers cases in which contradictory information has been offered about the love for a child with disabilities vs. the desire to have aborted that child had the parents been warned about the disabilities. She weighs the significance of genetic screening against the impact of the resulting decisions on the perceptions of people with disabilities.

At the heart of this issue, abortion, while given a whole chapter, perhaps does not receive the philosophical attention it deserves.

Abortion remains one of the prevailing issues underlying debates about genetic screening. Down syndrome, the primary example of a genetic abnormality that can be screened for and avoided, is misleadingly compared to much more severe and life-threatening genetic abnormalities discussed in other areas of the book.

While many believe that terminating a pregnancy is better than bringing to term certain pregnancies resulting in painful and short lives, this issue is much more highly debated than Rochman writes about.

She concludes that parents are just hoping to have healthy children, no matter how drastically technologies to determine health change. Where we draw the line of what is normal and what is abnormal, what we can choose for and what we should not, and many other debates are still up in the air.

Overall, “The Gene Machine” is an important read for prospective parents and anyone interested in ethical dilemmas and discourse.