Benefits, challenges and ethical principles associated with implementing noninvasive prenatal testing: a Delphi study

Charles Dupras; Stanislav Birko; Aliya Affdal; Hazar Haidar; Marie-Eve Lemoine; Vardit Ravitsky

doi:10.9778/cmajo.20180083

Article Figures & Tables

Tables

View popup

Table 1:

Panel composition

Field of expertise or group represented	No. of participants
Field of expertise or group represented	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.

View popup

Table 2:

Participant characteristics

Characteristic	Participants, %
Characteristic	Round 1 n = 61	Round 2 n = 58	Round 3 n = 49
Demographic
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

↵* Participants speaking other languages accounted for 4.1% at round 3.
↵† Residents of other provinces or territories all together accounted for 8.2% at round 3.
↵‡ One participant had another level of education but did not complete round 3.

View popup

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