“In recent attacks on newborn screening, the underlying narrative is fear of big government,” –

Not necessarily big government. I think the analysis is simplistic and seeks to stunt debate by framing it as a partisan political issue. At its core, this is an ethics issue. Consent is assumed to screen newborns for various treatable diseases (the intended purpose). To then retain this DNA, warehouse it and allow further unspecified research to be conducted above and beyond the intended purpose, is an egregious breach of the trust and good faith placed in the various health authorities.

The continued lack of an open and transparent collection and use policy combined with the condescending, patronizing attitude from some members of the medical community (and author of the above article) will serve to erode the trust and confidence of parents in the prospective handlers of their newborn’s dna.

There’s no need to grapple with unspecified “complex issues” or the inability of Twila Brase to “contextualize.. newborn screening in the socialization of the American healthcare system”, when what we’re dealing with is a simple matter of parental consent and medical ethics!

This issue is about baby’s rights and by default the protector of that baby’s rights – the parent/guardian. The government and the geneticist do not have any rights in this process, and I think the spate of lawsuits we’re seeing is a grassroots reaction aimed at re-enforcing this truth in a bid to limit and regulate the potential future effects of a runaway medical discipline.

“We can’t sacrifice the possible to the paranoid, because that would be shortchanging America’s children.”

Unless of course it infringes upon the inalienable rights outlined in your constitution, I presume?

Yet, I have to echo the sentiment of another reader who responded to your blog on the NSGC listserv, in that I feel at a loss to know how to appropriately confront this without, as you put it, throwing gasoline on the fire. I think you’ve hit upon a good idea, which is to re-frame the issue in the terms and language of individual rights. But it doesn’t entirely address the cultural gap between most health care providers and those member of the public who distrust institutions which, let’s face it, can be pretty paternalistic. I counseled a family in clinic the other day who were considering opting out of newborn screening because of the CNN report. I was so glad they asked about it, and glad to have the opportunity to correct misperceptions and to help them realistically weigh the benefits and risks. Unfortunately, it was difficult for me to manage my own indignation about the report which was still rather fuming at the time. I forgot my counseling skills in that moment and ended up giving the family a lecture. In the end, I think they just saw me as part of the government system that was out to dupe them. Your framing this issue as a political message helps me realize that perhaps we should approach it like any other cultural difference we may have with our patients – with curiosity and probing, with reflection, validation, normalization, and empathy – before trying to adjust beliefs based on inaccurate information. That tends to work in a counseling session, but is there a way we can apply that to interactions with the media? This is a skill I don’t have – I would have been terrified if I had been asked to speak on the Glenn Beck show!

Thanks for making me think about the issues from a different perspective.

In response to the comment about things dying down after parents are asked for their consent, I would urge you to realize that, although ideal, this concept is not as easy as it seems. First of all NBS education for new parents is not as great as you might think (we are working on this, but it is a slow process). There is still enormous need to educate the people administering the screens to better understand what tests are covered on the NBS and if they are DNA based or not (different in every state, and not every state offers DNA testing- yet), the logistics of blood spot storage, how long the samples are kept, info on the states IRB process etc. Although I feel that this should indeed be the ultimate goal, please realize it is not just as easy as- we are going to start to ask for consent now. Some states do indeed ask for consent for the NBS; however, in this case you would actually need to ask for two separate consents- the consent for NBS and the consent for blood spot storage. There is also a fear, if the nurse/health care professionals explaining the test do not understand the difference well enough, they might confuse the parents and family may opt to decline NBS all together and babies would go undiagnosed. New protocols would also need to be developed to either destroy the blood spot or to return the spot to the family.

This topic is very tricky and there is no easy answer, but one thing is clear, states are trying to adopt policies that work the best in this current environment, and with all this media hype more and more parents are questioning newborn screening.