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Research

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 and Vardit Ravitsky
October 31, 2018 6 (4) E513-E519; DOI: https://doi.org/10.9778/cmajo.20180083
Charles Dupras
Center of Genomics and Policy (Dupras) and Institute for Health and Social Policy (Haidar) McGill University; École de santé publique, Université de Montréal (Birko, Affdal, Haidar, Lemoine, Ravitsky), Montréal, Que.
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Stanislav Birko
Center of Genomics and Policy (Dupras) and Institute for Health and Social Policy (Haidar) McGill University; École de santé publique, Université de Montréal (Birko, Affdal, Haidar, Lemoine, Ravitsky), Montréal, Que.
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Aliya Affdal
Center of Genomics and Policy (Dupras) and Institute for Health and Social Policy (Haidar) McGill University; École de santé publique, Université de Montréal (Birko, Affdal, Haidar, Lemoine, Ravitsky), Montréal, Que.
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Hazar Haidar
Center of Genomics and Policy (Dupras) and Institute for Health and Social Policy (Haidar) McGill University; École de santé publique, Université de Montréal (Birko, Affdal, Haidar, Lemoine, Ravitsky), Montréal, Que.
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Marie-Eve Lemoine
Center of Genomics and Policy (Dupras) and Institute for Health and Social Policy (Haidar) McGill University; École de santé publique, Université de Montréal (Birko, Affdal, Haidar, Lemoine, Ravitsky), Montréal, Que.
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Vardit Ravitsky
Center of Genomics and Policy (Dupras) and Institute for Health and Social Policy (Haidar) McGill University; École de santé publique, Université de Montréal (Birko, Affdal, Haidar, Lemoine, Ravitsky), Montréal, Que.
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Article Figures & Tables

Tables

    • View popup
    Table 1:

    Panel composition

    Field of expertise or group representedNo. of participants
    Round 1Round 2Round 3
    Health care professional171615
     Gynecologist and obstetrician4315
     Genetic counsellor333
     Neonatalogist333
     Medical geneticist223
     Midwife111
     Nurse122
     Pediatrician111
     Other221
    Social science and humanities researcher171714
     History444
     Law332
     Bioethics222
     Sociology111
     Anthropology110
     Philosophy110
     Other555
    Patients or disability rights advocate*171614
     Association promoting social values666
     Association specific to Down syndrome444
     Association specific to an other condition210
     Involved in more than one association222
     Not affiliated to any association332
    Cultural or religious community advocate1096
     Islam332
     Christianity222
     Judaism221
     First Nations100
     Other221
    Total615849
    • ↵* We chose not to report the names of affiliated associations to protect the privacy of participants.

    • View popup
    Table 2:

    Participant characteristics

    CharacteristicParticipants, %
    Round 1
    n = 61
    Round 2
    n = 58
    Round 3
    n = 49
    Demographic
    Language*
     English70.570.769.4
     French26.225.926.5
    Sex
     Female55.756.957.1
     Male44.343.142.9
    Age, yr
     20–3916.417.218.4
     40–5949.248.346.9
     60–7932.832.834.7
     80–991.61.7–
    Country of birth
     Canada68.967.269.4
    Province of residence†
     Quebec39.339.638.8
     Ontario26.225.926.5
     Alberta9.810.38.2
     British Columbia8.28.68.2
     Manitoba6.65.26.1
     Nova Scotia3.33.44.1
    Degree completed‡
     Doctoral60.760.361.2
     Masters14.815.518.4
     Bachelor11.512.110.2
     College11.510.310.2
    Potentially influencing factor
    Having a child living with a disability23.022.424.5
    Knowing a child living with a disability86.986.285.7
    Living with a disability8.28.68.2
    Experienced prenatal screening47.543.144.9
    Experienced prenatal diagnosis18.017.216.3
    Disclosed a commercial interest1.61.72.0
    • ↵* 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

    FactorParticipants, %Change, % (R3 – R2)
    Benefits
    1. No risk of miscarriage83.7+13.0
    2. Noninvasiveness63.3+1.2
    3. Results available earlier in the pregnancy53.1+6.3
    4. Requires only a blood draw42.9+5.0
    5. Increased accuracy30.6+8.2
    6. Enhances prospective parents’ ability to prepare24.5−11.7
    7. Decreases anxiety for prospective parents16.3−7.8
    8. Provides more information potentially useful for decision-making16.3−25.1
    9. Answers specific needs10.2−3.6
    10. Potential to expand conditions tested4.1−8.0
    Challenges
    1. Adequate counselling of patients79.6+19.3
    2. Pressure to test67.3+10.4
    3. Adequate education of health professionals65.3+10.1
    4. Discrimination against people with disabilities59.2+10.9
    5. Pressure to terminate55.1+10.3
    6. Eugenics46.9+2.1
    7. Potential decrease in social support for people with disabilities44.9+1.8
    8. Routinization of prenatal testing38.8+0.9
    9. Stigmatization of the parents of children living with the tested conditions38.8−0.9
    10. Accuracy of the test34.7−1.5
    11. Decrease in social diversity34.7+5.4
    12. Adequate professional guidelines32.7−5.2
    13. Consent32.7+1.7
    14. Cost of implementation32.7−1.8
    15. Selective pregnancy termination32.7−5.2
    16. What conditions to test30.6+8.2
    17. Increased number of terminated pregnancies30.6−0.4
    18. Conflicts of interest linked to commercialization28.6−2.4
    19. Misperceptions of the reliability testing28.6−11.1
    20. Existence of adequate policies28.6−5.9
    21. Respect of human rights26.5−4.5
    22. Access-related issues24.5−1.4
    23. Increased anxiety for prospective parents18.4−7.5
    24. Conflict with religious values14.3+2.2
    25. Assigning responsibility to care for the child8.2−0.4
    26. Utility of the test8.2−12.5
    27. Confidentiality of the results2.0−13.5
    Principles
    1. Informed decision-making81.6+2.3
    2. Evidence-based decision-making59.2+8.9
    3. Respect for human dignity53.1+2.3
    4. Equitable access51.0+7.9
    5. Free choice51.0−0.7
    6. Fair resource allocation46.9+0.3
    7. Respect for diversity44.9+1.8
    8. Solidarity with people living with the tested conditions44.9−10.3
    9. Human rights40.8+0.6
    10. Equality between persons38.8+6
    11. Nonmaleficence (do not harm)36.7−6.4
    12. Autonomy30.6−7.3
    13. Protection of privacy28.6−5.9
    14. Sanctity of life28.6+4.5
    15. Inclusiveness22.4−6.9
    16. Beneficence18.4−5.7
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CMAJ Open: 6 (4)
Vol. 6, Issue 4
1 Oct 2018
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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
Oct 2018, 6 (4) E513-E519; DOI: 10.9778/cmajo.20180083

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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
Oct 2018, 6 (4) E513-E519; DOI: 10.9778/cmajo.20180083
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