Article Figures & Tables
Tables
Field of expertise or group represented No. of participants Round 1 Round 2 Round 3 Health care professional 17 16 15 Gynecologist and obstetrician 4 3 15 Genetic counsellor 3 3 3 Neonatalogist 3 3 3 Medical geneticist 2 2 3 Midwife 1 1 1 Nurse 1 2 2 Pediatrician 1 1 1 Other 2 2 1 Social science and humanities researcher 17 17 14 History 4 4 4 Law 3 3 2 Bioethics 2 2 2 Sociology 1 1 1 Anthropology 1 1 0 Philosophy 1 1 0 Other 5 5 5 Patients or disability rights advocate* 17 16 14 Association promoting social values 6 6 6 Association specific to Down syndrome 4 4 4 Association specific to an other condition 2 1 0 Involved in more than one association 2 2 2 Not affiliated to any association 3 3 2 Cultural or religious community advocate 10 9 6 Islam 3 3 2 Christianity 2 2 2 Judaism 2 2 1 First Nations 1 0 0 Other 2 2 1 Total 61 58 49 ↵* We chose not to report the names of affiliated associations to protect the privacy of participants.
Characteristic Participants, % Round 1
n = 61Round 2
n = 58Round 3
n = 49Demographic Language* English 70.5 70.7 69.4 French 26.2 25.9 26.5 Sex Female 55.7 56.9 57.1 Male 44.3 43.1 42.9 Age, yr 20–39 16.4 17.2 18.4 40–59 49.2 48.3 46.9 60–79 32.8 32.8 34.7 80–99 1.6 1.7 – Country of birth Canada 68.9 67.2 69.4 Province of residence† Quebec 39.3 39.6 38.8 Ontario 26.2 25.9 26.5 Alberta 9.8 10.3 8.2 British Columbia 8.2 8.6 8.2 Manitoba 6.6 5.2 6.1 Nova Scotia 3.3 3.4 4.1 Degree completed‡ Doctoral 60.7 60.3 61.2 Masters 14.8 15.5 18.4 Bachelor 11.5 12.1 10.2 College 11.5 10.3 10.2 Potentially influencing factor Having a child living with a disability 23.0 22.4 24.5 Knowing a child living with a disability 86.9 86.2 85.7 Living with a disability 8.2 8.6 8.2 Experienced prenatal screening 47.5 43.1 44.9 Experienced prenatal diagnosis 18.0 17.2 16.3 Disclosed a commercial interest 1.6 1.7 2.0 - Table 3:
Most important benefits, challenges and guiding ethical principles related to the implementation of noninvasive prenatal testing
Factor Participants, % Change, % (R3 – R2) Benefits 1. No risk of miscarriage 83.7 +13.0 2. Noninvasiveness 63.3 +1.2 3. Results available earlier in the pregnancy 53.1 +6.3 4. Requires only a blood draw 42.9 +5.0 5. Increased accuracy 30.6 +8.2 6. Enhances prospective parents’ ability to prepare 24.5 −11.7 7. Decreases anxiety for prospective parents 16.3 −7.8 8. Provides more information potentially useful for decision-making 16.3 −25.1 9. Answers specific needs 10.2 −3.6 10. Potential to expand conditions tested 4.1 −8.0 Challenges 1. Adequate counselling of patients 79.6 +19.3 2. Pressure to test 67.3 +10.4 3. Adequate education of health professionals 65.3 +10.1 4. Discrimination against people with disabilities 59.2 +10.9 5. Pressure to terminate 55.1 +10.3 6. Eugenics 46.9 +2.1 7. Potential decrease in social support for people with disabilities 44.9 +1.8 8. Routinization of prenatal testing 38.8 +0.9 9. Stigmatization of the parents of children living with the tested conditions 38.8 −0.9 10. Accuracy of the test 34.7 −1.5 11. Decrease in social diversity 34.7 +5.4 12. Adequate professional guidelines 32.7 −5.2 13. Consent 32.7 +1.7 14. Cost of implementation 32.7 −1.8 15. Selective pregnancy termination 32.7 −5.2 16. What conditions to test 30.6 +8.2 17. Increased number of terminated pregnancies 30.6 −0.4 18. Conflicts of interest linked to commercialization 28.6 −2.4 19. Misperceptions of the reliability testing 28.6 −11.1 20. Existence of adequate policies 28.6 −5.9 21. Respect of human rights 26.5 −4.5 22. Access-related issues 24.5 −1.4 23. Increased anxiety for prospective parents 18.4 −7.5 24. Conflict with religious values 14.3 +2.2 25. Assigning responsibility to care for the child 8.2 −0.4 26. Utility of the test 8.2 −12.5 27. Confidentiality of the results 2.0 −13.5 Principles 1. Informed decision-making 81.6 +2.3 2. Evidence-based decision-making 59.2 +8.9 3. Respect for human dignity 53.1 +2.3 4. Equitable access 51.0 +7.9 5. Free choice 51.0 −0.7 6. Fair resource allocation 46.9 +0.3 7. Respect for diversity 44.9 +1.8 8. Solidarity with people living with the tested conditions 44.9 −10.3 9. Human rights 40.8 +0.6 10. Equality between persons 38.8 +6 11. Nonmaleficence (do not harm) 36.7 −6.4 12. Autonomy 30.6 −7.3 13. Protection of privacy 28.6 −5.9 14. Sanctity of life 28.6 +4.5 15. Inclusiveness 22.4 −6.9 16. Beneficence 18.4 −5.7