The deVeber Institute
for Bioethics and Social Research

Greater Support Needed for Families Facing a Prenatal Genetic Diagnosis

Toronto, Canada (October 31, 2008) - A new non-invasive blood test for Down Syndrome, as described this month in the Proceedings of the National Academy of Sciences, and calls from the Society of Obstetricians and Gynaecologists of Canada to increase genetic screening before birth demand public and professional scrutiny for the practice of prenatal diagnosis.
Is Canada ready for these new tests?

Parents Not Prepared for Diagnosis

Research shows that parents and practitioners often have differing perceptions of the role of prenatal genetic testing. While practitioners often offer diagnostic tests as a way of preventing the birth of a "defective" child, pregnant women seek them out for reassurance that their babies are well and healthy.¹

Despite the shock and grief they many experience upon hearing the news of a fetal anomaly, the pregnant woman and her partner are usually urged to make the decision to terminate quickly.² Very little time is allowed for couples to become informed about parenting children born with an anomaly and to consider carrying through with the pregnancy.

Women Grieve After Abortion

While for many the termination of pregnancy is an attempt to eliminate suffering, research finds that 40% of women who abort for fetal abnormality suffer long-term emotional distress. In fact, research reveals that the distress does not diminish over time. A leading psychiatrist writes that "Women 2-7 years after were expected to show a significantly lower degree of traumatic experience & grief than women 14 days after termination …Contrary to hypothesis, however, the results showed no significant intergroup differences."³

Some women continue to grieve for years after terminating their pregnancy because of fetal abnormalities.

Resources and Research Needed

Our government provides assistance to children and adults who have disabilities, and many agencies exist to provide support. However, even greater attention is needed to ensure the continuation of support that will allow people with disabilities to live full lives, and to ensure that health care resources are adequately allocated to them throughout their lives. Such support is also needed to reassure parents prenatally of the support that will exist for their children with disabilities.

Some children, such as those with Trisomy 18 and Trisomy 13, are usually not expected to live past the first few weeks or months of life. A new service, perinatal palliative care, is now being offered in Canada and the United States to support terminally ill children and their families. These programs typically include a support team of obstetricians, neonatologists, nurses, chaplains and social workers. Together they provide a hopeful option that values and supports the lives of both the parents and the child by offering counseling and information during the pregnancy, around the time of birth, and after the child is born. Research shows that 40% to 80% of parents who are offered the option of perinatal palliative care request this care and choose to continue their pregnancy.⁴

Recommendations:

Before Prenatal Testing:

1.1 Parents should be made aware that prenatal tests are not mandatory. As stated in the Society of Obstetricians and Gynaecologists (SOGC) Clinical Practice Guideline, “counseling should be nondirective and should respect a woman’s choice to accept or to refuse any or all of the testing or options offered at any point in the process.”⁵

1.2 Parents should be given accurate, unbiased and comprehensive information about the potential outcomes of the genetic testing when the test is offered to them.

1.3 If the parents choose to undergo prenatal testing, they should be informed of both the challenges and benefits of raising a child with a genetic anomaly. Parents should be made aware of supports available in their community for people with disabilities and their families. This information should be given to parents before the test is administered.

After Prenatal Testing:

2.1 If the test results are positive for a genetic anomaly, parents should again be given accurate, unbiased, and comprehensive information about the genetic anomaly. Parents should immediately have access to services for people with disabilities and their families.

2.2 Perinatal palliative care services should be introduced and expanded in all Canadian hospitals that offer care for high risk pregnancies and community hospice programs should be encouraged to include perinatal hospice services through their agencies.

Looking Ahead

3.1 Further research should be conducted on the psychological impact on women and families of a) learning about a positive prenatal diagnosis, b) terminating a pregnancy due to genetic anomaly, and c) having a child with a genetic anomaly.

3.2 The government of Canada should adopt a Prenatal Awareness Act. Such an act would clearly define which governing and professional bodies would be responsible for carrying out the above recommendations. A similar bill entitled “Prenatally and Postnatally Diagnosed Conditions Awareness Act”6 recently passed unanimously in both Houses of the United States Congress. (September 23, 2008). This bill was a bipartisan effort of both Republican Senator Sam Brownbeck and Democratic Senator Edward Kennedy.

Barrie L.L. deVeber, MD, FRCP(C)
Co-President

Elizabeth Ring-Cassidy
Psychologist & Senior Research Associate

Barbara Farlow
Supporter of the Institute

Elaine Zettel
Executive Director