I received an e-mail from a lady in Canada who wrote: “Dear Dr. Bernstein,My name is Renate Lindeman, mother of two beautiful daughters, who happen to have Down syndrome.When I was pregnant with my oldest daughter who is 3,5 years old I was offered screening because of my maternal age of 35. I was naive and declined, thinking 'I am having a baby, I feel good, why screen?'It never occured to me that selective screening and termination happened, at least not on this scale.The past 3,5 years have certainly been a journey of awareness, often a painful one.Recently, I started a petition to call upon the Canadian government to create a 'prenatal diagnosed condition awareness act' http://www.gopetition.com/online/13481.html
What can I say, any suggestions, comments or support would be very much appreciated. Renate Lindeman”
Here is my support , Renate.
In the link Renate noted above, she explains the current situation in Canada and elsewhere regarding the need for prenatal diagnosed condition awareness laws.In Canada each year around 400,000 women will become pregnant and all these women will be offered some sort of screening or testing for an anomaly. As a result thens of thousands of women will be told their unborn baby may have a certain diagnosed condition. Technological advances in fetal screening are presenting parents -and doctors- with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited or biased information as guidance, more than 90% of prospective parents in Canada choose termination if their baby is diagnosed prenatal with Down syndrome. They may never know there is a world of resources, hope and support out there. In spite of tireless efforts from support groups their information pamphlets rarely reach prospective parents at the time they need it most.The United States recently re-introduced the Prenatal Diagnosed Condition Awareness Act, which ensures prospective parents are supplied with balanced information about the diagnosed condition and educational programs for health care providers are established. The U.K. is making great strides in establishing public awareness campaigns about diagnosed conditions. In Canada an expansion of screening programs is not accompanied by an appropriate expansion of awareness and educational programs.The Nova Scotia Down Syndrome Society believes that non-directive and balanced information about all options should be at the heart of prenatal screening.The Nova Scotia Down Syndrome Society joined by the Candian Down Syndrome Society (www.cdss.ca), believe there is an urgent need for an Prenatal Diagnosed Conditions Awareness Act and that the provinces and territories participate or enact equivalent legislation within their jurisdictions. This Act would ensure provinces and territories responsible for health care set aside appropriate resources for the establishment of educational and awareness campaigns that will enhance knowledge about diagnosed conditions and allow organizations to create and distribute balanced and accurate information to women and prospective parents.By creating a law that manages the above, Canada will ensure that all differences are valued equally.
Similar legislation in the United States has been attempted over the past several years but has not gone anywhere. Currently pending in the House of Representative is H.R. 3112: Prenatally Diagnosed Condition Awareness Act of 2007
The purpose is to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions. Introduced July 19 2007, the Bill has been sent to the House Energy and Commerce Committee.
I challenge my visitors to look at the current House Bill and come back and discuss the pros and cons of such legislation. The issue is that once a pre-natal diagnosis of fetal disorder is diagnosed, shouldn’t the parents be informed of the consequences of the diagnosis and given all the possible decisions which could be considered? Is there anything wrong with full disclosure? ..Maurice.