NZDSAPosition

StatementsFinal feedback

regarding theNZDSA's review

of the proposedposition statement

on prenatal screeningfor Down syndrome,

and termination

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As reported in Volume 51 of theNZDSA Down Syndrome Journal theNZDSA National Committee calledfor a review of the Position Statementon Prenatal Screening for Downsyndrome in March 2011. A reviewcommittee was appointed and theirrecommendations were tabled at theNZDSA National Committee meetingin September 2011.

It was also stated in this articlethat the NZDSA National Committeecirculated voting forms to the NZDSAmembers to determine whether toadopt the proposed position statementon prenatal screening and terminationas recommended by the NZDSA'sreview committee. The outcomeof the vote processing was that themembership indicated they wanted toadopt the proposed Position Statementon Prenatal Screening for Downsyndrome. Seethe page 7.

The NZDSA also indicated in thisarticle that their original intentionwas to adopt a neutral position ontermination. However, the NZDSAreceived a significant amount of votesfrom members indicating:

• that the NZDSA should adopt aposition on termination, and

• their support for adopting thefollowing position statement ontermination "The New ZealandDown Syndrome Association doesnot consider Down syndrome initself a reason for termination".In response to members' feedback,

the NZDSA undertook furtherconsultation inviting all members toparticipate in the consultation process,and were given the opportunity tovote. The NZDSA also indicated that ifa member did not return a voting formby the 29th February 2012 then theNZDSA would assume that a membersupports adopting the proposedposition statement on termination.

The outcome of this voting processindicated that a significant majority ofmembers wanted to adopt the proposedPosition Statement on termination.See page 7 for the NZDSA's positionstatements.

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The NZDSA's position statements

Position Statement on PrenatalScreening for Down syndrome

The New Zealand Down Syndrome Association believes that people with Downsyndrome have a right to life.• We value babies, children and adults with Down syndrome.• We believe people with Down syndrome leadfull and satisfying livesand enrich the

livesof those around them.• We provide support and information to parents, whanau and people with Down

syndrome.• The NZDSA advocates that the primary goal of prenatal screening should not

be to reduce the birth prevalence of Down syndrome in the population, butrather to improve prenatal health care and delivery care for the mother and baby.

The NZDSA respects the rights of parents and realises that parents need tochoose whether to decline or engage in prenatal screening and that this decision isinfluenced by a complex interplay of factors.

If parents choose to have prenatal screening, the NZDSA believes that screeningmust be presented in a way that does not discriminate against people with Downsyndrome. In addition, people must not be pressured into having prenatal screeningfor Down syndrome. The screening process must include the following:• Non-directive counselling.• Support and up-to-date information about Down syndrome for parents.• Information about prenatal screening must be available and this should include

accuracy, waiting time for results and associated risksof further testing.• Professionals involved in prenatal screening must have up-to-date information

about Down syndrome and the lives of people with Down syndrome.

Position statement on terminationThe New Zealand Down Syndrome Association does notconsider Down syndrome in itself a reason for termination.

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