Statement of principle

Down Syndrome International is committed to maximising the ability of people with Down syndrome to lead lives of meaning and purpose and to take their rightful place in community. This is achieved through inclusion and participation, research, education, information dissemination and outreach.

People with Down syndrome are active contributors to family life and to the communities in which they live, not passive recipients of care. Personal testimony from parents, siblings and extended family has shown that having a family member with Down syndrome can have a positive impact for all. This has been supported by several independent research findings. 

Down Syndrome International does not consider Down syndrome in itself a reason for termination. People with Down syndrome lead meaningful lives and contribute as valued and equal members of the community.

• DSi asserts and defends the right of a woman (or couple) to information about the human rights and potentialities of children with Down syndrome.
• DSi supports a balanced and informed approach to the use of prenatal screening and prenatal tests by government policies, the professionals involved and all family members.
• DSi contends that voluntary screening should be available to all pregnant women on request and the decision to undergo testing is made by the pregnant woman (or couple).

Prenatal testing

At the time of testing, easily understood and current information needs to be provided concerning:

• clarifying the difference between prenatal screening and diagnostic testing;
• the accuracy of tests and associated risks of further tests; 
• the life possibilities of people with Down syndrome in today’s world and with future developments;
• the impact on families, including benefits and challenges;
• the supports available in the community;
• appropriate counselling services for those who may seek it.

This information is to be provided in an unbiased way by skilled professionals who understand their ethical responsibilities. At the same time, potential parents should be directed to further sources of relevant and current information on Down syndrome.

For many parents, the discovery of Down syndrome may initially prove overwhelming. It is at this time that high quality and unbiased professional support is essential. This support must encourage the parents to maintain control throughout the decision-making process of how to proceed. They must be given the option of consulting with other relevant and informed professionals, families of persons with Down syndrome and local or national Down Syndrome organisations.