Newborn Genetic Screening in Minnesota

by Dr. Hsien-Hsien Lei
Posted November 14, 2007 in DNA Testing, DNA and Disease

The issue of newborn screening for genetic disorders in Minneosta is in the spotlight again. Chen May Yee of The Star Tribune explores the issue further with some very personal stories and gives the following reasons for why Minnesota has become “the battleground in the first big clash between genetics and privacy in the DNA age.”

• Minnesota screens newborns for more disorders than most other states and is one of the few states that test for all the conditions recommended by the American College of Medical Genetics numbering 53 disorders.
• Minnesota passed a law last year protecting genetic privacy.

Here are a couple of comments in response to the article. Many of the comments are personal stories about children who were found at screening to have potentially debilitating illnesses that required early intervention.

Molly Clay:

My daughter Grace died because of the lack of newborn screening in my state (GA). Had there been full screening coverage I would have known she had MCAD. However, because GA did not screen for this at the time she was born I had no idea that she had this deadly disease. If I had known, a few small changes in her diet would be all I had needed to do to keep her alive. Unfortunately this disease is a ticking time bomb with no symptoms. I woke up one morning to find my 19 month year old daughter blue and dead in her crib. She would be alive today if she had had comprehensive newborn screening at birth. This issue is important, do not let more children slip between the cracks. I think more children have these genetic disorders than we know of because of the lack of comprehensive screening.

Tom:

Opt out? Sure, go ahead, opt out. But also know that if and when you decide to do that, you also opt out of the medical care that will be required to care for your child once the diagnosis of one of these deadly genetic diseases is made. You don’t get it both ways. The whistle-blowers are the same crowd who refuse to immunize their kids, blame autism on those immunizations, take for granted the tremendous hard work and heart-felt concern of the medical establishment for the afflicted…The people who understand what is really going on here will have to maintain a stiff upper lip as Twila Brase and her misguided minions waste our time and money parading “privacy” around like it was really possible – or ethical in this situation – to be “private.” Folks, privacy is a figment of your imagination. And here, especially, it is selfish and disrespectful of a medical community that has your best interest at the center of its efforts. Are we going to tolerate going back to the era where hypothyroid babies were diagnosed only after they had been permanently disabled by weeks of inadequate hormone production? Back to the day and age when polio epidemics swept the country? And to suggest that someone is going to find some sort of genetic “gold mine” in YOUR child’s DNA is just completely laughable. And you should be paid for that on top of it, even more so.

via Minnesota Gene Pool Blog

Tags: newborn genetic screening, genetics, genes, dna, minnesota, privacy, genetic privacy

(4 comments)

RSS feed

4 Comments

Pingback by Gene Genie #20 | The Molecular Biology Blog

2007-11-19 00:14:25

[...] There was much baby talk around the blogs. Breastfeeding & IQ & norm of reaction at the Gene Expression blog highlighted a study that showed breast-fed infants with one variant of the FADS2 gene, a regulator of fatty acid pathways, benefited from an improved IQ compared to formula-fed infants. Hsien-Hsien Lei took this one step further at Eye on DNA, exhaulting the known health benefits of breastfeeding, genetically influenced or otherwise. Also on the subject of babies, Hsien-Hsien highlighted the clash between recently passed genetic privacy laws and Newborn Genetic Screening in Minnesota. [...]

Reply to this comment

 

Comment by Lynette

2007-12-10 13:56:10

Whoa……to the comment posted by Tom.

You do have a point but I believe you are not seeing the whole picture here.

I have a distinct fear when someone says that it’s for my benefit or the benefit of my kids.

Yes, I believe that the testing can find problems in newborns but I also do believe that the parents should be the ones to either accept or reject this.

If this information is already being shared with others of the supposedly “medical community” for their advancement then why should the parents have to pay for it.

How long will it be before this information creeps out into the hands of others or is being sold?

How long will it be before we are all typed and tagged at birth like a herd of cattle.

How long will it be before 2 people will not be allowed to be married because of incompatible genes.

How long will it be before a baby will not be allowed to be born because of a bad gene or genes.

Can you all see where this is headed?

Thank you.
Lynette

Reply to this comment

 

Pingback by American Journal of Medical Genetics Special Issue on Children and Genetics

2008-01-28 13:16:55

[...] Waiving informed consent in newborn screening research: Balancing social value and respect (Eye on DNA post 1, post 2) [...]

Reply to this comment

 

Comment by Drevis

2009-03-23 03:13:07

I am an attorney and my wife a physician. We are having newborn genetic testing performed by a private company under contract. If you want to trust the government with your child’s genetic information that is your choice. I have great faith in the medical establishment and no faith in our government. You decide what you want to do and that is your right. Do not presume to decide what is best for me and my family. I choose privacy and protecting my child’s rights today and in the future.

The government is not your only option for genetic testing and you can reap the full benefits of such in a private setting. It is too bad in my opinion that many people assume the government is the only avenue in this regard.

Drevis

Reply to this comment

 

Sorry, the comment form is closed at this time.