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 isnâ€™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 â€œopt-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?
Newborn Genetic Screening in Minnesota...
DNA Quote of the Day: Dr. Ruth Faden...
Eye on DNA Headlines for 5 September 2007...
Partial DNA Match for Nailing Criminals...
Eli Lilly Employees’ DNA Won’t Be Used Against Them...
Eye on DNA Headlines (Formerly Links) for 4 August 2007...
American Journal of Medical Genetics Special Issue on Children and Genetics...
Sorry, the comment form is closed at this time.
Search Eye on DNA
- Genetic Genealogy on Faces of America
- DNA Network Tweet Cloud
- Genetics = Real Science
- Larry David’s DNA Test
- Lopez Tonight First Late-Night Show to Offer DNA Testing
- American Genes Don’t Exist
- Knowledge about Genetic Risk is Power or is it Fear?
- Murderer Gets Reduced Sentence Because His Genes Made Him Do It
- Video: Knome’s Ari Kiirikki Speaks with Medgadget
- DNA Toys: Ben 10 and Digimon Digivice
- 100 Facts About DNA
- Salaries for Jobs in Genetics
- Fetal Gender DNA Tests Answer Common Pregnancy Question...Or Not
- How To Determine Paternity Without A DNA Test
- What does DNA mean to you?
- Eye on DNA Interview: Dr. Tzung-Fu Hsieh of RedTracer DNA Test for the Red Hair Gene, MC1R
- Books About DNA: The Crime of Reason by Robert B. Laughlin
- Genetically Modified Organisms Bring in the Cash
- Navigenics Introduces Physician Portal and Annual Insight Service
- People Who’ve Had Their Genomes Sequenced
09/29/2009 07:03 am
- Larry David’s DNA Test
11/17/2009 02:52 am
- 23andMe DNA Tests for $399, Down From $999
09/10/2008 04:33 am
- Crazy Genetic Marketing Ideas
07/05/2008 09:14 pm
- Parenting Children Using Genetic Tests
05/18/2009 02:09 am
- Business of DNA
- DNA @ Google Answers
- DNA and Disease
- DNA and Genealogy
- DNA and the Law
- DNA Around the World
- DNA Fun
- DNA in General
- DNA Inventions and Gadgets
- DNA Lab Talk
- DNA Podcasts and Videos
- DNA Quotes and Excerpts
- DNA Testing
- Gene Therapy
- Genetic Engineering
- Genetically Modified Foods and Organisms
- Jobs Involving DNA
- Personalities with DNA
- Polls About DNA
- January 2010
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009
- June 2009
- March 2009
- February 2009
- January 2009
- December 2008
- November 2008
- October 2008
- September 2008
- August 2008
- July 2008
- June 2008
- May 2008
- April 2008
- March 2008
- February 2008
- January 2008
- December 2007
- November 2007
- October 2007
- September 2007
- August 2007
- July 2007
- June 2007
- May 2007
- April 2007
- Ideas for Women
- Women in Science
- Dr. Deborah Serani
- The Science Creative Quarterly
- The Biotech Weblog
- Flu Patrol