NEW LAW:
President Signs Prenatally and Postnatally Diagnosed Conditions Awareness Act
On October 8, 2008, President Bush signed into law the Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810), originally introduced by Senators Kennedy (D-MA) and Brownback (R-KS). It has now become Public Law 110-374, which is aimed at increasing the provision of information and coordination of available support networks to parents of children diagnosed with Down syndrome or other prenatally or postnatally diagnosed conditions. The law provides that the Secretary of Health and Human Services may oversee activities such as the awarding of grants and contracts in order to accomplish these goals, which include:
(1) The establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions
(2) Provide new and expecting parents with up to date, evidence based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes
(3) The establishment of a national registry of families wanting to adopt newborns with Down syndrome or other prenatally or postnatally diagnosed conditions, and links to adoption agencies that place these babies,
(4) Provide contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other education and support programs.
President Signs Prenatally and Postnatally Diagnosed Conditions Awareness Act
On October 8, 2008, President Bush signed into law the Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810), originally introduced by Senators Kennedy (D-MA) and Brownback (R-KS). It has now become Public Law 110-374, which is aimed at increasing the provision of information and coordination of available support networks to parents of children diagnosed with Down syndrome or other prenatally or postnatally diagnosed conditions. The law provides that the Secretary of Health and Human Services may oversee activities such as the awarding of grants and contracts in order to accomplish these goals, which include:
(1) The establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions
(2) Provide new and expecting parents with up to date, evidence based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes
(3) The establishment of a national registry of families wanting to adopt newborns with Down syndrome or other prenatally or postnatally diagnosed conditions, and links to adoption agencies that place these babies,
(4) Provide contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other education and support programs.
This legislation, was informed by Dr. Skotko's research available here and summarized in this press release from Children's Hospital Boston, this press release from the Massachusetts Down Syndrome Congress, and this news announcement from Harvard University. (copied from Brian Skotko, M.D., M.P.P.)
Dr. Brian Skotko's research has revealed that: nearly 25% of doctors admit to giving patients negative information or actively urge parents to terminate their pregnancies, the majority of mothers said that doctors were incomplete, inaccurate, or offensive when it came to delivering a diagnosis of Down syndrome, and an estimated 90 percent of mothers who chose to terminate a pregnancy because of Down syndrome thought the condition "too severe, that they would be sad all the time and would be a burden to the family."
More than 90% of women pregnant with a baby diagnosed with Down syndrome terminate their pregnancy. This is largely due to inaccurate, outdated, or even lack of information in general provided to pregnant women by their doctors and genetic counselors, and their negative attitudes when delivering the prenatal diagnosis. The inadequate information also fail to do justice to the dignity and potential of people with Down syndrome.
Dr. Brian Skotko's research has revealed that: nearly 25% of doctors admit to giving patients negative information or actively urge parents to terminate their pregnancies, the majority of mothers said that doctors were incomplete, inaccurate, or offensive when it came to delivering a diagnosis of Down syndrome, and an estimated 90 percent of mothers who chose to terminate a pregnancy because of Down syndrome thought the condition "too severe, that they would be sad all the time and would be a burden to the family."
More than 90% of women pregnant with a baby diagnosed with Down syndrome terminate their pregnancy. This is largely due to inaccurate, outdated, or even lack of information in general provided to pregnant women by their doctors and genetic counselors, and their negative attitudes when delivering the prenatal diagnosis. The inadequate information also fail to do justice to the dignity and potential of people with Down syndrome.
Dr. Skotko reviews the results of his research on how physicians deliver a prenatal and postnatal diagnosis of Down syndrome in his presentation A Challenging Dynamic: Delivering a Diagnosis of Down Syndrome to New and Expectant Parents. The presentation includes highlights from his publications in Pediatrics and American Journal of Obstetrics and Gynecologies and includes "take-home" recommendations on how physicians can more effectively and compassionately deliver difficult news to new and expectant parents. This presentation can be adapted for both medical and non-medical audiences. (A podcast of his presentation at Vanderbilt University is available here. Scroll down to "Files" and click on Podcast_ _Compassionate Delivery of.mp3)
AMERICAN COLLEGE OF OBSTETRICIANS AND GYNECOLOGISTS (ACOG):
ACOG Guidelines:
Ob-gyns need to be well-informed about Down syndrome so that they can provide their patients with accurate information and relevant resource referrals so that they can make informed decisions." ~ Press Release, ACOG'S Screening Guidelines on Chromosomal Abnormalities What They Mean to Patients and Physicians (May 7, 2007)
ACOG Practice Bulletin 88:
In December 2007, ACOG Practice Bulletin 88 was published with clinical management guidelines for obstetrician-gynecologists. The Bulletin states: After the diagnosis of a chromosomal abnormality, the patient should receive detailed information, if known, about the natural history of individuals with the specific chromosomal finding. In many cases, it may be very helpful to refer the patient to a genetic counselor or clinical geneticist and national groups such as The National Down Syndrome Society (www.ndss.org) or National Down Syndrome Congress (www.ndsccenter.org) to help the patient make an informed decision.
ACOG Guidelines:
Ob-gyns need to be well-informed about Down syndrome so that they can provide their patients with accurate information and relevant resource referrals so that they can make informed decisions." ~ Press Release, ACOG'S Screening Guidelines on Chromosomal Abnormalities What They Mean to Patients and Physicians (May 7, 2007)
ACOG Practice Bulletin 88:
In December 2007, ACOG Practice Bulletin 88 was published with clinical management guidelines for obstetrician-gynecologists. The Bulletin states: After the diagnosis of a chromosomal abnormality, the patient should receive detailed information, if known, about the natural history of individuals with the specific chromosomal finding. In many cases, it may be very helpful to refer the patient to a genetic counselor or clinical geneticist and national groups such as The National Down Syndrome Society (www.ndss.org) or National Down Syndrome Congress (www.ndsccenter.org) to help the patient make an informed decision.
Recommendations for delivering prenatal results indicating a risk of Down syndrome
• Be informed about the opportunities and potentials of persons with Down syndrome and avoid giving outdated information.
• Inform patients of all reasons for testing including reassurance, advance awareness, and adoption.
• Deliver diagnostic results in person.
• Use sensitive language for delivering diagnosis. Avoid over-emphasis on possible problems.
• Staff should also communicate in a manner that is sensitive, accurate and consistent.
• Patients should not be pressured into selecting pregnancy termination.
• Offer the DownSyndromeBrochure.com brochure and other materials listing Down syndrome resources.
National Down Syndrome Congress - Statement on Prenatal Screening and Diagnosis
See http://www.ndsccenter.org/resources/position1.php
• Be informed about the opportunities and potentials of persons with Down syndrome and avoid giving outdated information.
• Inform patients of all reasons for testing including reassurance, advance awareness, and adoption.
• Deliver diagnostic results in person.
• Use sensitive language for delivering diagnosis. Avoid over-emphasis on possible problems.
• Staff should also communicate in a manner that is sensitive, accurate and consistent.
• Patients should not be pressured into selecting pregnancy termination.
• Offer the DownSyndromeBrochure.com brochure and other materials listing Down syndrome resources.
National Down Syndrome Congress - Statement on Prenatal Screening and Diagnosis
See http://www.ndsccenter.org/resources/position1.php
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