Newborn Genetic Screening vs Right to Privacy
by Dr. Hsien-Hsien Lei
Posted July 30, 2007 in DNA Testing, DNA and the Law
Every year, about 5,000 infants in the U.S. are diagnosed with a congenital disorder while an additional 1,000 children go undetected because genetic screening isn’t routine or incomplete in their state. The American Academy of Pediatrics, March of Dimes, and American College of Medical Genetics believe that all newborns should be screened for 29 genetic disorders. In the US, the comprehensiveness of newborn genetic screening varies from state to state.
Genetic testing of newborns in Minnesota has been under much debate. Laws stipulate that blood samples cannot be used for research or any other reason not related to disease testing unless the parents sign consent forms. Genetic privacy advocates believe that blood samples should not be taken at all unless parents “opt-in.” But there’s a problem with requiring consent – if people are not automatically included, screening rates are proven to be lower; Minnesota is opt-out and tests more than 99.5% of all newborns, Maryland is opt-in and tests less than 97%.
The Citizens Council on Health Care has been fighting the Minnesota state government to have newborn blood samples destroyed after disease screening (pdf) unless parents give consent for the samples to be used for research. But while this might appease genetic privacy advocates at this point in time, they should think ahead. Once whole genome sequencing is readily available to each individual, destroying blood samples will be too late since DNA analysis can be performed quickly, if not immediately.
Craig Westover, columnist at the St. Paul Pioneer Press, weighs individual privacy rights against public health with respect to newborn genetic screening. He believes that governments who “coerce” people to participate in genetic screening are violating people’s personal privacy.
At stake is more than a theoretical “slippery slope” argument about the dangers of government collection of personal data. It’s a classic case of the seen versus the unseen. The visible results of genetic testing are measured in children’s lives. The unseen, unintended consequences are individual psychological, social and financial risks including social stigma, insurance and employment discrimination. Given individual concerns, detailed counseling, informed consent and confidentiality should be key elements of any genetic testing program.
Despite acknowledging the benefits of newborn genetic screening, Westover concludes that the Minnesota Health Department has not proven that the state should be performing infant genetic screening let alone collecting and storing individual DNA.
My question is: If not the government, then who? Who will be making sure that our children receive the medical care they need and deserve from the time they’re born?
Tags: craig westover, newborn genetic screening, genetics, genes, dna, children’s health, health, medicine, disease
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I understand your points. However, what is the point of requiring (alternately, “coercing”) such screening if we do not also ensure that every child (and adult) has access to the health care that would treat or prevent any health issues that such tests might reveal? I am all for “making sure that our children receive the medical care they need and deserve from the time they’re born.” I think the public may be wise to mistrust this motivation in the area of genetic health given the government’s track record with its citizen’s health generally.
Hi Yvette, Nice to hear from you!
I agree that access to healthcare is an issue but I have to believe that if any child is found to have a congenital disease, there would be some way to get him/her treatment. On the other hand, maybe I’m wrong. Otherwise, why would the Estradas feel the need to file a wrongful birth lawsuit to care for their two children?
As a parent, I’d rather know as early as possible if my child needs special medical treatment. Saying the gov’t shouldn’t be in the business of genetic screening is like saying the CDC and FDA serve no purpose.
Pretty much agree with Yvette, we have to ensure that right kind of health care is provided to children
Absolutely agree with you, test.
We ask what are governments and tax monies for?
Destroying the blood samples after screening is good remedy, automatic screening is not so bad. They must however let the parents opt-out if they choose so.
Hi jhay, There are some who would argue that it’s the allocation of government funds that’s at issue here. And then, of course, there’s the Big Brother aspect of a meddlesome government.
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[...] Newborn Genetic Screening vs Right to Privacy (Eye on DNA): The Citizens Council on Health Care has been fighting the Minnesota state government to have newborn blood samples destroyed after disease screening unless parents give consent for the samples to be used for research. [...]
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You should be satisfied. In Hungary, the newborns are screened for 4 (I mean 4) genetic disorders: galactosaemia, congenital hypothyreosis, biotinidase deficiency and phenylketonuria…
I’m never satisfied, Berci. You know that.
[...] Newborn Genetic Screening vs Right to Privacy. As we learn about the relationship between our genome and disease, we will be able to screen for inherited predispositions. As Hsien reports, every year about 5,000 infants in the U.S. are diagnosed with a congenital disorder while an additional 1,000 children go undetected because genetic screening isn’t routine or incomplete in their state. However, genetic screening of newborns raises its own ethical questions. [...]
[...] For example, an infant is unable to give consent for genetic testing, but many states in the US routinely test newborns for genetic disorders. Today and tomorrow we will be examining another group of [...]
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“Tell me that pre-existing and genetic testing is not the same.” Despite the employers abiding the law to not discriminate in disability, please don’t make me laugh. Every cancer survivor knows that everytime you apply for a job, and if they hire you and you want insurance which they give to you even if you don’t want it anyways, the form ask’s if you have had any life threatening illness’s such as HIV/AIds, or cancer,ect. you have to tell the truth. Then the insurance from the job makes you wait a whole year to insure you, and they tell you that anything related to your cancer if you go to the doctor for will not be covered.Whats the purpose of the going to the doctor,if your trying to prevent cancer from coming back and the insurance tells you they won’t cover it.Isn’t that the goal of ALL health departments,etc. Now tell me that the companies and health insurance companies aren’t getting away with Murder!!! That’s why we need :Universal Health Care”
Hi Kiari, Thanks for the comment! You remind us of all that’s wrong with the health insurance system.
Unfortunately, you know what it all comes down to in this world – money. If you have it, then no worries. If you don’t, then be prepared to fight to survive.
It’s true… money is always an issue, but government controlled healthcare is not the way to go. People should have the right to know or not to know about such things. Our population was just fine before genetic testing. Put yourself in the shoes of a parent who has just foung out that you child will have a tendency for cancer later in life. Think of how you would feel. Or prehaps you are said child. Would you want to know how you were going to die? Forcing people to get screened is wrong, just like forcing them to have health insurance is wrong. This is a country of free will and free choice. Burning the blood afterwords would probably solve people’s problems about having their DNA on record, but who would be there to make sure it got done?
[...] 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 [...]
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Sounds to me like our wonderful government is really trying to track vaccine damage throughout the generations (altering of DNA). After all, every vaccine package inserts supplied by the drug manufacturers state that they don’t know if the vaccines alter our DNA, cause cancer, or impair our fertility because no studies have been done. (Just take a look at it next time you are in the docs office). This newborn screening – will it come before of after the destructive Hep B vaccine? Hmmm…