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Prenatal genome sequencing:
Ethical & regulatory implications
for post-birth access to information
Vardit Ravitsky, PhD
Bioethics Program, University of Montreal
@VarditRavitsky
May 17th, 2019
2
www.pegasus-pegase.ca
What is Non-Invasive Prenatal Testing (NIPT)?
 Tests cell-free fetal DNA floating in maternal plasma
 At 9-10 weeks gestation, ~10-15% of cffDNA comes from placenta
 cffDNA clears from woman’s blood within 2 hours after
birth, ensuring tested DNA is from current pregnancy
What makes NIPT unique?
 Easy – just a blood test
 Safe – no associated risk of pregnancy loss (miscarriage)
 Early – week 9-10 (amnio starts at 15)
 Reliable – screening test, but for certain conditions
(e.g. trisomy 21) ‘quasi-diagnostic’
 Commercial offer – introduced by private companies
 Expansion – used for a growing number of conditions
What can NIPT currently test for?
 Fetal sex (for x-linked conditions)
 Blood type
 Trisomy 21, 13, 18
 Other (more rare) trisomies
 Sex chromosome abnormalities
 Autosomal single-gene disorders
 Micro-deletion syndromes
 Technically: whole genome sequencing (NIPW)
Science
Translational
Medicine
2010
What makes NIPT unique?
 Invasive testing - only carried out for conditions ‘severe
enough’ to justify the risk of miscarriage
 Safety & timing of NIPT may lower the threshold for
‘appropriate testing’
 Individuals may wish to test for -
 less severe / treatable conditions
 late-onset conditions
 non-medical information such as sex and paternity
 physical or even cognitive / behavioral traits
What does the future hold?
 Ultrasound made the uterus transparent
and revolutionized our perception of
the fetus
 Whole genome NIPT could make
the fetus itself ‘transparent’
Ethical and social issues surrounding NIPT
 Focused on testing as a ‘search and destroy mission’
 the assumption of termination
 Concerns regarding routinization
 On individual level:
 erosion of counseling an consent
 increased pressure to test and terminate
 On societal level:
 Eugenics, threat to diversity, to disability rights
 increased stigma and discrimination
Ethical and social issues surrounding NIPT
 However, if prenatal testing is based on the notion of
informed choice
 not of ‘search and destroy’
 then preparation for birth is a good reason to test
 Yet, issues related to post-birth challenges have been
only marginally addressed in bioethics
What happens post-birth if parents use NIPW?
Issues arise regarding:
 Privacy
 Right to an open future
 Right not to know
 Consent
 Potential harms:
 Family level (dynamics, psychological issues)
 Societal level (discrimination)
What happens post-birth if parents use NIPW?
Where can we go for advice?
NIPW: Post-birth challenges
Existing analysis that may assist:
 Genetic testing of children / minors
 received ample attention
 ethical analysis
 professional guidelines
NIPW: Post-birth challenges
Existing analysis that may assist:
 Genetic testing of children / minors
 received ample attention
 ethical analysis
 professional guidelines
 Newborn screening as gov-run programs
 Much ethical & legal scrutiny
 Now considering sequencing newborns:
 the BabySeq project
NIPW: Post-birth challenges
 Existing analysis to explore:
 Genetic testing of children / minors has received ample
attention
 Ethical analysis, professional guidelines
 Whole-Genome Sequencing of newborns: the BabySeq
project
 Testing a fetus, not a child
 dangerous links to debate on moral status of fetus & abortion
Why NIPW is different?
 Testing a fetus, not a child
 dangerous links to debate on moral status of fetus & abortion
 Reasons for testing may be unclear even to parents
 possibility of using info for a termination-decision makes it difficult
to justify limiting the offer of NIPW
Why NIPW is different?
 Testing a fetus, not a child
 dangerous links to debate on moral status of fetus & abortion
 Reasons for testing may be unclear even to parents
 possibility of using info for a termination-decision makes it difficult
to justify limiting the offer of NIPW
 Commercial context
 Private offer harder to limit than gov-run programs
 For-profit drive of companies to offer expanded pricier packages
 Reproductive prenatal tourism
Why NIPW is different?
NIPW: Post-birth challenges
Need for clear conceptual approach
prioritizing
privacy/open-future
 banning NIPW
Spectrum of possible conceptual approaches
prioritizing
privacy/open-future
 banning NIPW
prioritizing parental autonomy
 allowing unrestricted
NIPW & post-birth use of info
Spectrum of possible conceptual approaches
prioritizing
privacy/open-future
 banning NIPW
prioritizing parental autonomy
 allowing unrestricted
NIPW & post-birth use of info
normative arguments
against open future /
right not to know 
unrestricted NIPW
Spectrum of possible conceptual approaches
prioritizing
privacy/open-future
 banning NIPW
unrestricted NIPW
but limited parental
post-birth use of info
prioritizing parental autonomy
 allowing unrestricted
NIPW & post-birth use of info
normative arguments
against open future /
right not to know 
unrestricted NIPW
Spectrum of possible conceptual approaches
prioritizing
privacy/open-future
 banning NIPW
nuanced approaches
based on type of
information
unrestricted NIPW
but limited parental
post-birth use of info
prioritizing parental autonomy
 allowing unrestricted
NIPW & post-birth use of info
normative arguments
against open future /
right not to know 
unrestricted NIPW
Spectrum of possible conceptual approaches
NIPW: Post-birth challenges
 If we move into a future where many babies are born already
sequenced prenatally…
 much genetic info will be available on individuals who never
consented to testing
 legal protections against any type of genetic discrimination
would have to be strengthened
 cultural change will be needed
“Whether we view NIPD gladly as a way
to reduce human suffering, warily as a
step towards a eugenic dystopia, or as a
mix of both,
we should agree that the better we prepare,
the more likely we are to avoid the worst
misuses of this potentially transformative
technology.”
Hank Greely, Nature 2010
Thank you

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Vardit Ravitsky, "Prenatal Genome Sequencing: Ethical and Regulatory Implications for Post-Birth Access to Information"

  • 1. Prenatal genome sequencing: Ethical & regulatory implications for post-birth access to information Vardit Ravitsky, PhD Bioethics Program, University of Montreal @VarditRavitsky May 17th, 2019
  • 3. What is Non-Invasive Prenatal Testing (NIPT)?  Tests cell-free fetal DNA floating in maternal plasma  At 9-10 weeks gestation, ~10-15% of cffDNA comes from placenta  cffDNA clears from woman’s blood within 2 hours after birth, ensuring tested DNA is from current pregnancy
  • 4. What makes NIPT unique?  Easy – just a blood test  Safe – no associated risk of pregnancy loss (miscarriage)  Early – week 9-10 (amnio starts at 15)  Reliable – screening test, but for certain conditions (e.g. trisomy 21) ‘quasi-diagnostic’  Commercial offer – introduced by private companies  Expansion – used for a growing number of conditions
  • 5. What can NIPT currently test for?  Fetal sex (for x-linked conditions)  Blood type  Trisomy 21, 13, 18  Other (more rare) trisomies  Sex chromosome abnormalities  Autosomal single-gene disorders  Micro-deletion syndromes  Technically: whole genome sequencing (NIPW)
  • 7. What makes NIPT unique?  Invasive testing - only carried out for conditions ‘severe enough’ to justify the risk of miscarriage  Safety & timing of NIPT may lower the threshold for ‘appropriate testing’  Individuals may wish to test for -  less severe / treatable conditions  late-onset conditions  non-medical information such as sex and paternity  physical or even cognitive / behavioral traits
  • 8. What does the future hold?  Ultrasound made the uterus transparent and revolutionized our perception of the fetus  Whole genome NIPT could make the fetus itself ‘transparent’
  • 9. Ethical and social issues surrounding NIPT  Focused on testing as a ‘search and destroy mission’  the assumption of termination  Concerns regarding routinization  On individual level:  erosion of counseling an consent  increased pressure to test and terminate  On societal level:  Eugenics, threat to diversity, to disability rights  increased stigma and discrimination
  • 10. Ethical and social issues surrounding NIPT  However, if prenatal testing is based on the notion of informed choice  not of ‘search and destroy’  then preparation for birth is a good reason to test  Yet, issues related to post-birth challenges have been only marginally addressed in bioethics
  • 11. What happens post-birth if parents use NIPW? Issues arise regarding:  Privacy  Right to an open future  Right not to know  Consent  Potential harms:  Family level (dynamics, psychological issues)  Societal level (discrimination)
  • 12. What happens post-birth if parents use NIPW? Where can we go for advice?
  • 13. NIPW: Post-birth challenges Existing analysis that may assist:  Genetic testing of children / minors  received ample attention  ethical analysis  professional guidelines
  • 14. NIPW: Post-birth challenges Existing analysis that may assist:  Genetic testing of children / minors  received ample attention  ethical analysis  professional guidelines  Newborn screening as gov-run programs  Much ethical & legal scrutiny  Now considering sequencing newborns:  the BabySeq project
  • 15. NIPW: Post-birth challenges  Existing analysis to explore:  Genetic testing of children / minors has received ample attention  Ethical analysis, professional guidelines  Whole-Genome Sequencing of newborns: the BabySeq project
  • 16.  Testing a fetus, not a child  dangerous links to debate on moral status of fetus & abortion Why NIPW is different?
  • 17.  Testing a fetus, not a child  dangerous links to debate on moral status of fetus & abortion  Reasons for testing may be unclear even to parents  possibility of using info for a termination-decision makes it difficult to justify limiting the offer of NIPW Why NIPW is different?
  • 18.  Testing a fetus, not a child  dangerous links to debate on moral status of fetus & abortion  Reasons for testing may be unclear even to parents  possibility of using info for a termination-decision makes it difficult to justify limiting the offer of NIPW  Commercial context  Private offer harder to limit than gov-run programs  For-profit drive of companies to offer expanded pricier packages  Reproductive prenatal tourism Why NIPW is different?
  • 19. NIPW: Post-birth challenges Need for clear conceptual approach
  • 21. prioritizing privacy/open-future  banning NIPW prioritizing parental autonomy  allowing unrestricted NIPW & post-birth use of info Spectrum of possible conceptual approaches
  • 22. prioritizing privacy/open-future  banning NIPW prioritizing parental autonomy  allowing unrestricted NIPW & post-birth use of info normative arguments against open future / right not to know  unrestricted NIPW Spectrum of possible conceptual approaches
  • 23. prioritizing privacy/open-future  banning NIPW unrestricted NIPW but limited parental post-birth use of info prioritizing parental autonomy  allowing unrestricted NIPW & post-birth use of info normative arguments against open future / right not to know  unrestricted NIPW Spectrum of possible conceptual approaches
  • 24. prioritizing privacy/open-future  banning NIPW nuanced approaches based on type of information unrestricted NIPW but limited parental post-birth use of info prioritizing parental autonomy  allowing unrestricted NIPW & post-birth use of info normative arguments against open future / right not to know  unrestricted NIPW Spectrum of possible conceptual approaches
  • 25. NIPW: Post-birth challenges  If we move into a future where many babies are born already sequenced prenatally…  much genetic info will be available on individuals who never consented to testing  legal protections against any type of genetic discrimination would have to be strengthened  cultural change will be needed
  • 26. “Whether we view NIPD gladly as a way to reduce human suffering, warily as a step towards a eugenic dystopia, or as a mix of both, we should agree that the better we prepare, the more likely we are to avoid the worst misuses of this potentially transformative technology.” Hank Greely, Nature 2010