DSi Position Statement on Prenatal Testing

Statement of Principle

Down Syndrome International (DSi) is committed to maximising the ability of people with Down syndrome to lead independent lives and to participate in the community. This is achieved through research, education, information dissemination and clinical services.

People with Down syndrome are active contributors to family life, not passive recipients of care

Personal testimony from hundreds of parents, siblings and other family members has shown that having a member with Down syndrome can have a positive impact for all. This has been supported by several independent research findings.

Prenatal Testing

DSi asserts and defends the right of a woman (or a couple) to information about the human rights and potentialities of children with Down syndrome.

DSi encourages a balanced and informed approach to the use of 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 has to be made by the pregnant woman (or couple).

BUT, that at the time of testing, easily understood information MUST be provided that is up-to-date concerning:

  • The accuracy of tests and associated risks of further tests;
  • The life prospects of people with Down syndrome in today’s world and with future developments;
  • The impacts on families (benefits and challenges);
  • The support available in the community;
  • Appropriate counselling services for those who may need it.

This information MUST be provided in an unbiased way by well trained professionals who understand their ethical responsibilities as well as having good communications skills and up-to-date information. At the same time, potential parents should be directed to further sources of information.

For many parents, the detection 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 and families of persons with Down syndrome and local or national Down Syndrome organisations.

Our purpose is to ensure that the prenatal testing process informs all potential parents 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 his or her potential.

DSi does not consider Down syndrome in itself a reason for termination. People with Down syndrome can and do lead full and rewarding lives and contribute as valued and equal members of the community.