4.3.4 Non-Invasive Prenatal Testing
Meredith Vanstone, PhD
Co-Authors: Mita Giacomini, PhD; and Jeff Nisker, MD, PhD, FRCSC, FCAHS
- Understand the ethical implications of private prenatal genetic tests that require support and services from the public system.
- Prepare a response to encountering patient requests for private-pay services that balances the best interests of your patient and the public health care system.
- Learn about the essential elements of supporting informed choices about NIPT and other prenatal tests.
Sally Smith is a 33 year old married mother of three. You have been her physician for many years, caring for her through all three pregnancies. By all observations she is a devoted mother who is delighted with her growing family. Her past medical history is unremarkable and she has no health concerns.
Ms. Smith presents at your office to confirm her fourth pregnancy. As you work through the questions and information you need to present at this first prenatal visit, she asks if she can have the new Down Syndrome test she has heard about, that will tell her whether or not her baby has Down Syndrome at 9 weeks gestation. You talk to her about some of the NIPT options, informing her that these tests are available from several companies for those who can pay privately, but they are not accurate enough to be considered diagnostic, and any results should be confirmed with an invasive diagnostic test such as amniocentesis or CVS. You also discuss how NIPT compares to publicly-funded non-invasive prenatal screening tests, including differences in detection rate, timing, and cost. Ms. Smith has lots of questions about her options and her visit quickly runs over the allotted time as you discuss the various differences between NIPT and conventional screening tests. Ms. Smith decides to go home and think about the information further, as she wants to discuss the tests with her husband and look more closely at their family budget. You agree that if she wants to proceed with one of the tests, she will re-book to complete the necessary paperwork.
- You are now late for your next patient and will end up playing catch-up all day, due to the time you spent discussing NIPT with Ms. Smith. You are committed to spending as much time with each patient as needed, but does this apply when that time is spent discussing a private test?
- NIPT is not publicly funded in most jurisdictions, but it can be obtained privately. If a patient pays privately for NIPT, they may gain earlier access to some public services, such as counselling services and pregnancy termination. Do you consider this preferential treatment? Does it seem a fair and equitable use of public resources?
- When you do counsel about NIPT, how can you discuss this testing option to best facilitate informed decision-making by your patients?
NIPT is an example of a test which is only available to women who can pay privately in most Canadian jurisdictions. In some jurisdictions, such as Ontario, it is available publicly if a woman is identifiably at high risk. In this case, your patient has an average risk for fetal aneuploidy.
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Short Author Biographies
Meredith Vanstone is an Assistant Professor in the Department of Clinical Epidemiology and Biostatistics and a member of the Centre for Health Economics and Policy Analysis at McMaster University. Her research interests include social and ethical aspects of health technology policy, reproductive and genetic technologies, and the use of technology in health professional education and practice. Meredith approaches research from a socio-cultural perspective, using qualitative methods to analyze both primary and secondary data.
Mita Giacomini is a Professor in Clinical Epidemiology and Biostatistics at McMaster University, and a member of the Centre for Health Economics and Policy Analysis. She led the development of McMaster's Health Policy PhD program and previously served as its Director. She holds graduate degrees in health services and policy analysis, history of medicine and public health. Her publications have addressed topics including health policy ethics, political reasoning in health technology assessment, health resource allocation, values in evaluation and policy-making, interdisciplinarity, and uses of qualitative evidence in health care. Current research projects focus on the roles of evidence and theory in health policy arguments, values and ethics in Canadian health policy, and the social and ethical dimensions of health technology assessment. Giacomini has provided consultation and service to local, provincial, national and international health agencies in related areas. She currently serves on the Ontario Health Technology Advisory Committee. Giacomini teaches in the areas of health policy, philosophy of science, and research methodology.
Jeff Nisker is a Professor of Obstetrics-Gynaecology at the Schulich School Medicine & Dentistry, Western University, and Scientist, Children's Health Research Institute. He holds, and has held, CIHR and Genome Canada grants to explore ethical and social issues in reproductive medicine, genetics, and exposure of pregnant women to environmental toxins. He has held a CIHR/Health Canada grant exploring public engagement for citizen deliberation regarding pre-implantation genetic diagnosis. Jeff has written or co-written over 150 scientific articles and book chapters, as well as seven plays. His plays have been performed throughout Canada, as well as in the United States, the United Kingdom, Australia and South Africa.
Support for this work was received from the Canadian Institutes of Health Research. Meredith Vanstone's salary is supported by the Ontario Ministry of Health and Long Term Care through a Health Systems Research Fund grant entitled "Harnessing Evidence and Values for Health System Excellence". The views expressed in this document are the views of the authors and should not be taken to represent the views of the Ministry of Health and Long Term Care.