Prenatal Genetic Screening and Testing

The Canadian Down Syndrome Society works to ensure equitable opportunities for all Canadians with Down syndrome by fostering a climate of understanding and mutual respect for the dignity, worth and equal rights for ALL people.

The Canadian Down Syndrome Society asserts that prenatal screening and testing for the purposes of identifying Down syndrome is accompanied by numerous ethical concerns.

The CDSS asserts that to ensure fair, balanced and informed decisions with regards to prenatal screening and testing:

• Physicians providing obstetric care must have a responsibility to ensure that women receive unbiased, accurate, current and value-neutral information regarding Down syndrome prior to presenting them with the choice to undergo screening or testing.
• An appropriate period of time is provided to prospective parents between receiving information and making a decision whether or not to proceed with testing.
• The decision whether to undergo screening or testing rests solely with the woman.
• The role of the physician or medical practitioner is clearly understood to provide information, and never to influence a woman’s decision. If patients decline certain tests, physicians and other medical personnel should respect the individual’s wishes and not directly or indirectly pressure patients to undergo undesired screenings.
• Practitioners providing obstetric care have a responsibility to provide information about the procedures and related medical and ethical implications as early as possible in pregnancy. This information must be current, factual, balanced, and value neutral. [Skotko B. Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics. Jan 2005 (Vol. 115, Issue 1, Pages 64-77)].
• The decision regarding the progression of a pregnancy must clearly remain with the family. It is the woman’s absolute right to continue the pregnancy.
• If a determination of Down syndrome occurs, the opportunity to meet a family that includes a person with Down syndrome should be facilitated by the acting health care practitioner.
• Given the 2007 Society of Obstetricians and Gynecologists Canada (SOGC) recommended guidelines for Prenatal Screening for Aneuploidy, both the SOCG and federal and provincial governments have a responsibility to ensure that all screens, tests, information and related counseling are readily available, funded and supported within provincial health systems and regional health authorities as part of a comprehensive prenatal strategy.
  
We believe that the widespread use of genetic screening for the purpose of identification and termination of fetuses with Down syndrome may adversely affect the quality of life for all persons with Down syndrome and threatens the diversity and vitality that people with Down syndrome and other disabilities currently contribute to many Canadian communities.

We advocate that the primary goal of prenatal genetic testing should not be to reduce the birth prevalence of Down syndrome in the population but rather to provide opportunities to improve prenatal and delivery care for the mother and baby.



Position Statement on Prenatal Genetic Testing
Updated and Approved 2007

Please note: This position statement is not a static document. As we continue to gather research, this statement is subject to change in order to reflect new findings. It is the goal of the CDSS to always have position statements that are the most relevant and up to date.