PRENATAL TESTING
DSI POSITION STATEMENT ON PRENATAL TESTING
Position Statement
Statement of Principle
Down Syndrome International (DSI) is committed to maximizing the ability of people with Down syndrome to lead independent lives and to participate in the community in which they live. This is achieved through research, education, information dissemination and clinical services.
Through our association with children and adults with Down syndrome, we recognize the positive influence that persons with Down syndrome have on their families and in their communities.
Down Syndrome International encourages a responsible approach to the use of prenatal tests. Voluntary screening should be available to all pregnant women requesting it, but DSI advises caution in the use and interpretation of the results. It is important to ensure that information is provided by professionals who have up-to-date knowledge of the life prospects of people with Down syndrome as well as on the impacts on family members.
Down Syndrome International asserts and defends the right of a woman (or a couple) to information about the rights and potentialities of children with Down syndrome.
Down Syndrome International holds that the decision to undergo prenatal testing lies with the woman (or couple). Down Syndrome International also holds all potential parents are entitled to and should be presented with:
• up-to-date and appropriate medical information concerning the accuracy of tests and their associated risks,
• accurate information regarding Down syndrome and the life prospects of individuals with Down syndrome in today’s world,
• comprehensive information that will allow families/parents to make informed decisions, and
• appropriate counseling services for those who request assistance.
Down Syndrome International asserts that professionals whom parents consult should, on ethical grounds, provide unbiased and up-to-date information.
The detection of Down syndrome may prove overwhelming to some parents and it is essential that they should maintain control throughout the decision-making process, and that they should be given the option of consulting with a range of educational, health and allied professionals and with the families of persons with Down syndrome.
The detection of Down syndrome may initially prove overwhelming to some parents. It is essential that they should be given the option of consulting with a range of educational, health and allied professionals, and with families of persons with Down syndrome. These consultations should both provide the accurate information about Down syndrome, described above, and enable the parents to take control of the decision making process.
Many medical professionals themselves do not have a complete understanding of the potential of people with Down syndrome, and DSI is committed to providing professionals with current information on the potential and expectations of people with Down syndrome and the range of services available to them and their families. (http://www.downsyndrome.com)
In the final analysis, the information process should ensure that all potential parents are informed of the challenges and joys of having a child with Down syndrome, and that those who choose to do so are given the skills, knowledge and support to assist their child to achieve her or his potential.
Position statement released by the Board of Down Syndrome International. July,2008
