Last week, Jason Collins, an NBA player, came out as gay. Hopefully you find this post’s headline objectionable. But why didn’t the USA Today editors think so for the headline of their front-page story last week on prenatal testing for Down syndrome?
USA Today recently gave prominent coverage on prenatal testing for Down syndrome and the impact prenatal testing has on patients. The reporter, Liz Szabo, and her editors should be commended on the comprehensiveness of the report. It featured quotes from representatives from the testing companies, Down syndrome support organizations, a bioethicist, physicians, and parents, making it the most balanced article on these developments to date. But, then there was the headline:
Earlier prenatal tests usher in ‘heartbreaking’ decisions
Down syndrome advocates want the world to know these lives are worth living
Think of any other minority group, substitute it in a similar structure to the USA Today headline, and the wrongness of the headline will be apparent:
Earlier prenatal tests for gender usher in ‘heartbreaking’ decisions. Women advocates want the world to know that female babies are lives worth living.
Earlier prenatal tests for the “ginger gene” usher in ‘heartbreaking’ decisions. Redheads want the world to know their lives are worth living.
And, to close the loop that this post’s headline started:
Earlier prenatal tests for gay gene usher in ‘heartbreaking’ decisions. Gay advocates want the world to know that homosexuals have lives that are worth living.
Is it now apparent what is wrong with the USA Today headline?
For any other minority group, it would be taken as a given that theirs are lives worth living–not something that only advocates for that minority would recognize. It is a commentary on society that the USA Today headline writers felt it newsworthy that there are some in society who believe that those with Down syndrome have lives that are worth living. Perhaps that is newsworthy, but if so, then we’ve achieved a eugenic common sense that is most troubling.
The article shares how once people get to know someone with Down syndrome, their perception of living a life with Down syndrome improves–something which scholarly studies have also found. As Szabo’s on-line companion piece makes even clearer, meeting someone with Down syndrome makes “Down syndrome” just one characteristic of what is recognized as another equal person. The concluding lines of the main article share this realization that the featured mother who had a prenatal diagnosis hopes other parents who meet her daughter will experience:
It’s OK, I know you look at her and see Down syndrome. I look at her and see this wonderful toddler. You’ll get there, too.
The USA Today headline, however, reinforces the reductionist view of Down syndrome: that a person with Down syndrome is reduced to simply that one genetic characteristic, but, Down syndrome advocates want the world to know that that doesn’t mean the person still doesn’t have a life worth living.
The wrongness of USA Today’s headline may have even been appreciated by USA Today, but only after the paper version went to print. The online version does not have this headline. Instead, it is titled, “With Down syndrome diagnoses comes a wrenching choice.”
While not addressed in Szabo’s article (or any other newspaper or television report on Down syndrome) the USA Today headline reveals the fundamental ethical challenge posed by prenatal testing. Prenatal testing does not exist in a sterile vacuum, cut-off from the human experience of ignorance, bias, and bigotry. Instead, prenatal testing is practiced in a world where one of the nation’s most widely circulated newspapers recognizes that its readership needs to be assured that a minority group still lead lives that are worth living.
For most every other recognized minority, such reassurance would not even be considered necessary. That it is with Down syndrome demonstrates the challenge for Down syndrome prenatal testing to be administered in a non-directive, ethical way.
The differance, as we both know, is that the world considers disability as something that is wrong and best avoided.