“It would throw them into an emotional pit,” remarks my classmate. “And a third of people diagnosed through genetic tests get false positives.” Even after the bell, talk continued.
We held a class discussion on the effects of genetic screening, the controversial, predictive tests offered to at-risk individuals for inherited disease. The structured I-talk-and-everyone-else-listens segments soon meandered into fierce side conversations. But if anything was made clear after that period, it would be that we knew very little. Much of the disagreement on testing was based on hearsay and exaggeration.
This is to be expected from sixteen-year-olds, after all. However, on a larger scale, this notion of “bad” genetic testing is unexpectedly commonplace.
Data analysis of the General Social Survey (GSS) polled by the University of Chicago reveals that 43 percent of those who knew “nothing at all” about genetic testing thought it to be harmful, correlating ignorance with dread. Despite all supposed harms, the pros—crucial psychological, financial, and bodily preparations—still outweigh the cons. And yet, among the well-learned participants of the GSS, 20 percent dissent as well. What could be so damning about this beneficial procedure?
Many fear discrimination above all. Patients can become trapped in the “genetic underground,” where patients would not report positive results from direct-to-consumer (i.e. DIY) DNA kits to insurance providers in fear of sky-high premiums or policy denials. Without reporting, they refuse themselves of proper medical attention. The Americans with Disabilities Act prohibits genetic prejudice, but does not directly bar employers from screening out sick workers. Recently, this issue has reentered national spotlight with criticism. The proposed Preserving Employee Wellness Programs Act in Congress right now would enable employers to force employees to provide genetic information to their prescribed wellness programs. Call it the Patriot Act on biological privacy, if you will.
What these concerns neglect is that this discrimination is rare and that the entire process is guided by genetic counselors. They ease doubts, console family members, inform on prognosis, insurance opportunities, etc. Heart disease and cancers, many with genetic links, are America's most prevalent killers, often because they are addressed too late; preemptive interventions can stall and even prevent severe conditions. For example, members of an Oregonian family carried mutations predisposing them to breast cancer. The CDC detailed that this is was discovered through testing. And none have had issues to date.
The day after, my class discussed medical advancements. Stupefyingly, genetic tests remained absent from the conversation, meanwhile early detection and prevention, the fruits of the testing itself, were celebrated. Yes, the technology and laws surrounding it may be imperfect, but that does not discredit its immensely powerful applications in personalized medicine. If you're in genetic jeopardy, take the test. Only the ignorance can harm you.
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