or “wrongful birth” lawsuits - Disability Rights Education & Defense

Wrongful Birth and
Wrongful Life Lawsuits:
disabled lives as legal
Samantha Crane, J.D.
Policy Director
The Autistic Self Advocacy Network
2013 H St. 7th Floor • Washington, DC 20035
Voice: (202) 596-1056
Wendy F. Hensel, The Disabling Impact of Wrongful
Birth and Wrongful Life Actions, 40 HARV. CIVIL
Sam Bagenstos, Hedonic Damages, Hedonic
Adaptation, and Disability, 60 Vanderbilt L. Rev.
745, 785 (2007)
Wrongful Birth and Wrongful Life Actions
“Wrongful birth” and “wrongful life” lawsuits
are legal actions claiming that a person with a
disability should not have been born.
Example: A pregnant woman undergoes an amniocentesis.
Due to a laboratory error, the fetus tests negative for Down
Syndrome even though the fetus does have Down
Syndrome. The woman sues the laboratory, claiming that
she would not have brought the pregnancy to term if she
had known the fetus had Down Syndrome.
What aren’t we talking about?
• Claims for medical malpractice that caused
harm to the fetus or parent
• Legally prohibiting termination of pregnancy
based on disability
• Non-disability-based lawsuits over the denial
of the right to terminate a pregnancy
Physical Disability: Bryan Santana
Photograph of
Santana’s mother, Ana
Mejia, as she tearfully
testified in court about
her son’s disabilities
Florida, 2011: $4.5 million
awarded to parents of child born
without arms and only one leg.
Mother testified that, if doctor had
correctly diagnosed via ultrasound,
“she would have terminated the
pregnancy rather than subject
Bryan to what she believes will be
a life of physical and psychological
pain and untold hardship.”
Intellectual Disability: Kalanit Levy
Oregon, 2012: $2.9 million
awarded to couple whose
child was born with Down
Syndrome. The couple
argued that, if the prenatal
test had accurately
diagnosed the fetus, they
would have sought an
Photograph of Kalanit
alongside her two brothers.
The faces have been pixelated
for privacy. The children are
smiling and embracing.
Background: Elements of a Medical
Malpractice Lawsuit
1. Duty of care: a medical professional with
relationship to patient
2. Breach of duty: may be intentional or
through carelessness (“negligence”)
3. Causation: Breach must cause some event
4. Damages: Event must be recognizable as a
Example: Ordinary
Medical Context
• Duty: A woman visits her doctor for an annual checkup and
undergoes routine lab tests.
• Breach: The doctor fails to notice elevated white blood cell count in
the lab report.
• Causation: Thinking everything is ok, the doctor doesn’t order
follow-up tests that would have revealed the patient has leukemia.
The woman does not get a leukemia diagnosis or receive treatment
until the cancer is very advanced.
• Damages: The woman needs much more expensive cancer
treatment than she otherwise would have, suffers loss of income
after having to quit her job, and finally dies.
What makes Wrongful
Birth/Wrongful Life Different?
• In wrongful birth and wrongful life lawsuits, the
damages arise from the fact that the child was
born with a disability.
– Wrongful birth lawsuits (most common) frame these
damages as harm to the parent (e.g., the expense of
caring for the child and paying for necessary services).
– Wrongful life lawsuits (least common) frame these
damages as harm to the child (e.g., the “suffering” the
child experiences as a result of being born disabled)
In both cases, damages can include costs to support
the person over entire lifetime.
Contrast with:
• Lawsuits for birth injuries or other
disabilities/injuries caused by the doctor
– These are seen as “normal” malpractice
• Lawsuits for injury to parent as a result of not
terminating risky pregnancy
– Also “normal” malpractice
• Lawsuits over birth of nondisabled child (e.g.,
failed sterilization/abortion)
– Courts allow these as long as damages are limited to
the expense and distress associated with pregnancy –
do not award damages for costs of child-rearing
Pause for Questions
Different Protection for Different Choices
• Plaintiffs can only win if they can prove they
would have chosen to terminate pregnancy
– Parents who got accurate diagnoses, or who can’t
credibly testify that they would have sought an
abortion, don’t get compensation
• No “reverse” cause of action
– No known case compensating parents who terminate
based on false positive test, or due to misleading
information about diagnosis.
• No way for parents of unwanted but nondisabled children to win costs of supporting
– Only births of disabled children are “harms.”
Coercive Impact of Disparately Available
• Families who sue for wrongful birth feel that
doing so is necessary in order to provide for
disabled child
– Levy family attorney: “This has always been only
about providing for their daughter and making her life
the best that they can make it.”*
– Santana attorney: “"We're here for an amount to fund
Bryan's life care plan.”*
• This means families must testify that they would
have wanted to terminate pregnancy in order to
access this source of funding for their child’s
Effect on Adaptation to Disability
“By focusing on the negative feelings that occur during
[the initial adjustment] period, plaintiffs with
disabilities may delay or derail their ultimate ability to
adapt to their new condition.
If nothing else, the drive to avoid cognitive dissonance
can lead a person who repeatedly testifies (even
insincerely) about her lost enjoyment of life to come to
believe that testimony.”
– Sam Bagenstos, Hedonic Damages, Hedonic Adaptation,
and Disability, 60 Vanderbilt L. Rev. 745, 785 (2007)
(discussing “quality of life” damages in personal injury
Example: Santana coverage
Now nearly three years old, Bryan is a happy
toddler, but Mejia and her husband Rodolfo
Santana know his future is bleak.
Defense attorney: “He’s dearly loved by his family.
They can't imagine a life without him. They
wouldn't give him up for all the money in the
world. So why are we here?”
Example: Levy coverage
Experts have told the Levys that she likely
won't be able to live on her own, or
support herself. The Levys worry about
who will care for their daughter once they
are gone.
Contrast with Lawsuits Concerning
Unwanted Nondisabled Children
“[P]arents of a normal, healthy child cannot
establish the fact of damage with reasonable
certainty…. [A]llowing recovery would brand
the child an ‘emotional bastard.’”
“We simply will not collaborate in conduct that
disparages an innocent child.”
– Moorman v. Walker, 773 P.2d 887
(Wash. Ct. App. 1989).
Contrast with Lawsuits Concerning
Unwanted Nondisabled Children
“[A]n unhandsome, colicky or otherwise "undesirable"
child would provide fewer offsetting benefits, and would
therefore presumably be worth more monetarily in a
"wrongful birth" case. The adoption of that rule would
thus engender the unseemly spectacle of parents
disparaging the "value" of their children or the degree
of their affection for them in open court.”
“[I]t is impossible to tell, at an early stage in the child's
life, whether its parents have sustained a net loss or net
– McKernan v. Aasheim, 102 Wn.2d 411, 687 P.2d 850
Class Impact
• Lawsuits only available to parents who actually
obtained prenatal screening and would have been able
to access abortion
• Like all medical malpractice litigation, wrongful birth
lawsuits require ability to pay for medical expert
– Upper-class couples more likely to be able to pay legal
expenses up-front
– Also more likely to find “contingency-based”
representation, since attorneys count on class-based juror
• Others must rely on social safety net, including
“spending down” assets to access Medicaid, home- and
community-based services
Precedential/Persuasive Impact
• Courts usually require that wrongful birth action be based
on the claim that a “child has such gross deformities, not
medically correctable, that the child will never be able to
function as a normal human being.”
– Arche v. U.S. Dep’t of Army, 798 P.2d 477, 480–81 (Kan. 1990)
(describing requirements of a wrongful birth action in Kansas)
• American jurisprudence relies significantly on citing other
court’s holdings or reasoning in previous decisions
concerning similar or analogous subject matter
• As a result, courts’ recognition of disabled lives as harms in
wrongful birth contexts can impact courts’ reasoning in
other contexts, including:
– Euthanasia or assisted suicide
– Surrogate decisionmaking re: end-of-life care
Precedential/Persuasive Impact
• One court upholding wrongful birth action hinted at possibility of
holding parents liable for failing to failing to abort child with
“If a case arose where, despite due care by the medical profession in
transmitting the necessary warnings, parents made a conscious choice to
proceed with a pregnancy, with full knowledge that a seriously impaired
infant would be born, that conscious choice would provide an intervening
act of proximate cause to preclude liability insofar as defendants other
than the parents were concerned. Under such circumstances, we see no
sound public policy which should protect those parents from being
answerable for the pain, suffering and misery which they have wrought
upon their offspring.”
Curlender v. Bio-Science Laboratories, 165 Cal. Rptr. 477 (Cal. Ct.
App. 1980).
• California legislature responded by passing law against this sort of
lawsuit: Cal. Civ. Code § 43.6 (West 2003)
Pause for Questions
Alternative Options?
• Legislatively abolishing wrongful life or
wrongful birth actions
– Must draft carefully to avoid infringement of
remedies for personal injury to child or gestational
parent, or infringement of overall right to
– Goal = ensuring that certain choices or lives are
not implicitly valued over others
Alternative Options?
• Limiting “wrongful birth” actions to costs of
pregnancy/childbirth, like wrongful birth actions
concerning nondisabled children
• “No-Fault” compensation system outside of
– Suggested by Art Caplan (NYU Bioethicist)
– Still favors parents who could obtain prenatal testing
over parents who do not
Alternative Options?
• Comprehensive regulation of genetic testing
– Suggested by Hensel in Disabling Impact of
Wrongful Birth and Life Actions
– FDA is actually in the process of increasing
regulation of genetic testing
• Expanding litigation options to include actions
against doctors for providing incorrect
information about disability prognosis, leading
to termination
Thank You!
ASAN Website: www.autisticadvocacy.org
Samantha Crane, Director of Public Policy,
Autistic Self Advocacy Network:
[email protected]

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