DNA Day is coming next week. Some of the testing companies may offer sales. Who do you consider to be our DNA President(s)?
Many of us know about the role that President Bill Clinton played in encouraging the Human Genome Project. He maneuvered the pubic and private competitors into working toward the same goal and thus expedited the pace of discovery. He even prematurely declared success in this landmark venture so that he could claim it happened on his watch. For this all of us genetic genealogists owe him a debt of gratitude.
On the other side of the political aisle, most of us don't think of George W. Bush as a DNA friendly President. At least I don't usually even though I am related to him at about the 9th cousin level through at least three of his 4 grandparents. Most of us can remember his ban in 2001 on federal funding for the use of new lines of embryonic stem cells in medical research. However, by the last year of his presidency he signed a couple of significant pieces of helpful legislation.
On the eve of President Bush's last DNA Day in office 2008, he signed into law the Newborn Screening Saves Lives Act of 2007:
The purpose of the `Newborn Screening Saves Lives Act of 2007' is to facilitate the creation of Federal guidelines on newborn screening, to assist State newborn screening programs in meeting Federal guidelines, to improve education, outreach, and coordinated follow-up care, and to improve the laboratory quality and surveillance for newborn screening.
Newborn screening is a public health activity, which provides early identification and follow-up for treatment of infants affected by certain genetic, metabolic, hormonal and/or functional conditions. Since the early 1960s, when Robert Guthrie devised a screening test for phenylketonuria (PKU) using a newborn blood spot dried onto a filter paper card, more than 150 million infants have been screened for a number of genetic and congenital disorders. Screening detects disorders in newborns that, if left untreated, can cause disability, intellectual disabilities, serious illness and even death. Except for hearing, screening tests are done using a few drops of blood from the newborn's heel, usually taken in the hospital 24 to 48 hours after birth. With the advent of the tandem mass spectrometer, it is now possible to detect more than 40 conditions and for some conditions such as PKU, tandem mass spectrometry has been shown to reduce the false positive rate for this disorder.
Parents are often unaware that the number and quality of newborn screens varies from State to State and while newborns are regularly screened and treated for debilitating conditions in some States, in others, screening may not be required and conditions may go undiagnosed and untreated. In 2004, the American College of Medical Genetics completed a report commissioned by the United States Department of Health and Human Services which recommended that, at a minimum, every baby born in the U.S. be screened for a core set of 29 treatable disorders regardless of the State in which he or she is born. At present, only 15 States and the District of Columbia require infants to be screened for all 29 of the recommended disorders. In fact, States currently mandate screening newborns for as few as 9 conditions while others mandate more than 40 conditions. An estimated 1,000 of the 5,000 babies born every year in the United States with one of the 29 core conditions potentially go unscreened through newborn screening. If diagnosed early these conditions can be successfully managed.
The `Newborn Screening Saves Lives Act of 2007' will assist States in improving and expanding their newborn screening programs as well as provide for Federal guidelines on the conditions for which newborns in all States should be screened. The public health crisis that ensued after hurricanes such as Katrina and Rita demonstrated, among other things, that contingency planning for newborn screening is essential. Under this legislation the Secretary is required to develop a national contingency plan for newborn screening for use by States in the event of a public health emergency.The bill authorized $58,500,000 the first year to carry this activity.
The next month President Bush signed the Genetic Information Nondiscrimination Act of 2008 (GINA) . As most of you know, GINA bans discrimination based on genetic information in making employment and health insurance decisions. It does not protect decisions about life and long term care insurance.
President Bush's actions in 2001 and 2008 appear to be polar opposites. Does anyone have insight into his apparent transformation?
The Newborn Screening legislation takes DNA testing to the delivery room. Soon I will post about taking it even earlier. It's a great story -- at least I think it is. Stay tuned!