"WRONGFUL LIFE AND WRONGFUL BIRTH. DO YOU SUE FOR BEING ALIVE?"
Ms Agni Kortsidaki
The increasing use of genetic tests, especially as part of prenatal examinations, has resulted in the development of a new theory of tort liability - genetic malpractice. Because of the nature of the information that genetic tests uncover and the decisions that are made on the basis of that information, genetic malpractice claims raise unique ethical and legal concerns.
The claims are brought against physicians, nurses, other health care providers, hospitals, and testing laboratories. The claimants allege that these individuals and entities were negligent and that this negligence resulted in the birth of a child with a genetic disease. The alleged negligence may be based upon the failure to recommend an appropriate genetic test, the failure to administer the test correctly, the failure to interpret the test accurately, or the failure to advise the child's parents of the test results, to name just a few examples.
Genetic malpractice claims are couched most often as wrongful birth and wrongful life actions.
II. GENETIC MALPRACTICE CLAIMS
Wrongful birth claims are brought by the parents of a disabled child alleging that the mother's physician (or other health care provider) failed to inform her of the risk of having a child with the disability in question, thus depriving her of the opportunity to choose to avoid conception or to terminate the pregnancy. The doctor is accused of not performing proper genetic screening or not adequately counselling prospective parents. The claim is normally for the increased cost and emotional distress associated with caring for the child with disabilities. Wrongful birth is becoming widely accepted as a valid legal category.
Patients can successfully hold their physicians responsible for many things when it comes to medical liability, but there is one area where the courts have been extremely reluctant to let patients go: A claim for wrongful life.
In wrongful life, the disabled child - or those acting on the child's behalf - sues for being alive. Sometimes the parents become defendants. The health care provider is accused for failure to inform the child's mother of the risk of congenital or heritable conditions so as to permit her to avoid conceiving or, if she is already pregnant, to terminate the pregnancy. Here, the essence of the child's claim is that the child ought not to have been born at all, and that his or her life with a disability has caused and will continue to cause pain and suffering, as well as financial loss. The defendant in these actions does not cause the child's disability. Instead, the defendant fails to avert it. This may arise in three ways. First, the defendant may negligently advise the parent prior to conception of the risk of any child inheriting a genetic disability. Secondly, the negligence could arise ex utero in, for example, the selection of a damaged embryo for implantation during infertility treatment. Thirdly, the negligence may arise after conception, for example, where the doctor fails to advise the mother that she is carrying a disabled child. Thus, the professional is negligent only insofar as he misreads an ultrasound or does not communicate the chances of a genetic defect due to disease or genetic predisposition. The birth defects that can give rise to such suits range from the fatal (such as anencephaly - the brain growing outside the skull) to the manageable (such as deafness, blindness, Down's syndrome, and haemophilia).
Wrongful life still encounters stiff resistance. The difference between wrongful birth and wrongful life is largely that, in the latter, the money is awarded directly to the child, not the parents, thus providing for his/her future needs.
It is important to note that in neither cause of action does a plaintiff claim that the medical professional actually caused the child's birth defects. The defects occur either naturally or by some other cause.
Wrongful birth actions raise the following types of legal and ethical issues:
- Should a genetic precondition be distinguished from a genetic disease in deciding whether to become pregnant or, once pregnant, to continue the pregnancy?
- Should a fetus with a genetic abnormality be aborted?
- Should the parents be required to establish that they would have aborted a fetus had they been advised of the fetus's true genetic status before they bring suit or recover damages?
- Wrongful life actions raise even more sensitive legal and ethical issues, including:
- Does a person have a right not to be born?
- What is the appropriate measure of damages where a person claims that he or she never should have been born?
- Is nonexistence preferable to a life with a genetic disease?
- If so, what does this indicate about the value society places on persons living with genetic diseases?
- Should a child born with a genetic disease be entitled to sue his or her parents where the parents were advised of the presence of a genetic abnormality and decided to continue the pregnancy?
III. DECISIVE LEGAL CASES EXPLORING THE ISSUES OF WRONGFUL LIFE AND WRONGFUL BIRTH IN COUNTRIES AROUND THE GLOBE
In January 2002 the French parliament voted to overturn a controversial legal ruling that established the 'right not to be born'. The purpose of the law was to stop people with disabilities from filing wrongful life lawsuits against doctors for allowing them to be born. The new law states that nobody can claim to have been harmed simply by being born. It would still allow parents to sue doctors if they made a 'blatant error' and failed to diagnose a serious illness in a fetus or a pregnant woman. 'This is a very important decision', Xavier Mirabel, head of France's National Union of Associations of Parents and Friends of the Mentally Handicapped, had told reporters after the ruling. 'French society can no longer consider a disabled person to be a mistake'.
The measure was in response to criticism the government had faced following three rulings by France's highest court (Cour de Cassation) to allow people with disabilities to sue doctors for failing to diagnose a disability - or inform their mothers that they might have a disability - before they were born.
In November 2000, the court ruled that Nicolas Perruche could sue his mother's physicians because they had not detected that she had caught rubella during her 1983 pregnancy. Because of her infection, Nicolas was born blind, deaf and has mental retardation. Nicolas' parents said that they would have had him aborted if they had known he would have disabilities. In effect, the boy sued the doctors for having been born.
The court made two similar rulings the following months. The rulings involved children with Down's syndrome and had re-ignited anger within France's disabled community, which saw the decisions as devaluing the lives of those born with disabilities.
Outraged disability rights groups said that the court believed that 'it is better to be dead than handicapped'.
Doctors who specialize in treating pregnant women were also angered by those rulings. They claimed that they would now be forced to pressure mothers into having abortions when there is any kind of risk of a child being born with a disability. They also pointed out that their insurance premiums had multiplied by 10 times in a year's time, i.e. since the Perruche ruling. Doctors had said that because no ultrasound scan can be 100% accurate, they are under increasing pressure to advise abortions, even if there is only minimal concern. It was the doctors - not disability rights advocates - that forced the French parliament to push through the new legislation. At some point physicians had begun to strike in protest. They refused to do ultrasounds or any other tests designed to detect disabilities or illnesses in a fetus.
Ethicists and legal specialists had also attacked the rulings. "To allow a child to be born cannot be considered a mistake - that must be written into law," said Laurent Aynes, a professor in civil law at Paris' Sorbonne University.
A number of wrongful life and wrongful birth claims have come before the Canadian courts. In one case, the parents of two children born with Duchene muscular dystrophy claimed their physicians were negligent in failing to provide or to refer them for genetic counseling. In another case, the parents of a child with Down syndrome claimed negligence in that they were not informed of the availability of prenatal genetic testing. These cases emphasize a legal principle, which is established in Canadian law, as well as the law of various other countries: a health care provider has a positive legal duty to inform the patient of all material concerning the existing (or proposed) pregnancy, including procedures which will test for possible fetal abnormality. Failure to do so constitutes negligence.
A Supreme Court justice in Vancouver, British Columbia, ruled in January 2003 that a physician should pay a divorced couple $325,000 ($214,000 US) for the "distress and expense" of giving birth to a child with Down's syndrome.
Justice Michael Catliff determined that Dr. Ken Kan was negligent when he did not order an amniocentesis test for Lui-Ling "Lydia" Zhang, of Vancouver, which likely would have found that her unborn daughter, Sherry, had Down's syndrome. Zhang has said that she would have aborted her pregnancy had she known that before the baby was born in April 1997.
Dr. Kan was ordered to pay $10,000 in damages to Zhang and $214,000 in damages and living costs to Simon Fung, the father with whom 9-year-old Sherry now lives in Los Angeles, California. Justice Catliff explained that the award would have been higher, but he cut the amount in half because the parents contributed to the situation themselves.
The patient however shares some responsibility. The physician successfully claimed contributory negligence on the part of the child's mother, for failing to follow medical advice. The physician had not ordered an ultrasound because the mother had not returned to her physician's office for a second prenatal visit until later in pregnancy than such tests would normally be offered.
During a 15-day trial in November 2002, Zhang said that Fung could not accept that she had given birth to a child with a mental disability. Having Sherry "totally disrupted our plans", she explained. The couple's one-month-old marriage then began to fall apart, Zhang said. Zhang had seen Sherry just eight times in five years.
C) United Kingdom
Courts in the UK have refused to allow wrongful life claims. In McKay v. Essex Area Health Authority, Mary, while in her mother's womb, was infected with rubella. She is partly deaf, blind and disabled in other respects, the details of which have not been given to the judge. Mary claimed that the doctor owed her a duty of care when in utero. He had failed to treat the infection after having been told by the mother that she suspected it. It was claimed that he should have advised her to have an abortion.
The English Court of Appeal rejected the claim for wrongful life noting that to recognize such a claim would make a further inroad on the sanctity of human life which would be contrary to public policy. It would mean regarding the life of a handicapped child as not only less valuable than the life of a normal child, but so much less valuable that it was not worth preserving. Even if a court were competent to decide between the conflicting views of theologians and philosophers and to assume an 'afterlife' or non-existence as the basis for the comparison, how can a judge put value on the one or the other?
The Court of Appeal of New South Wales concluded on the 29th April 2004 in a wrongful life case that doctors are not responsible for the costs of caring for a child if they did not inform the parents that the child might be born with disabilities. The suit was filed by the parents of, and on behalf of, Alexia Harriton, Keeden Waller and Chelsey Edwards.
Harriton is in her early twenties, and has disabilities because her mother acquired rubella during her pregnancy. Waller is now 4 years old, and has intellectual disabilities, cerebral palsy, and seizures because his father had a congenital blood deficiency known as antithrombin (AT3). Keeden, who was conceived through in-vitro fertilization treatment, inherited a clotting disorder from his father. Lawyers had argued that the IVF clinic should have screened the embryos to ensure the one used did not carry the disorder, which has left the child with the cerebral palsy and uncontrolled epilepsy.
Chelsey Edwards was born - after a failed vasectomy - with a rare syndrome whose sufferers can only communicate with a sound like the mewing of a kitten.
The parents of the children claimed that they would have ended their pregnancies if they had known about the children's disabilities. They sued their doctors for "the harm they (the children) suffered by being born in their disabled condition" along with the "needs and expenses that each has had and will incur". The children's lawyers claimed that the complaint was not about the children having been born, but having to suffer disabilities resulting from having been born.
By a 2-1 majority, the court rejected the parents' argument, noting that the doctors had not caused the children's disabilities in the first place. The court also said that putting the blame on doctors in such a case would send the wrong message about the sanctity of life. The judge (Chief Justice James Spigelman) said the law did not recognize conduct which could have led to terminating a pregnancy. He said an action by a disabled child involves "an assertion by the child that it would be preferable if she or he had not been born". Spigelman added that such claims do not "reflect values generally, or even widely, held in the community".
The Australian Medical Association applauded the decision, which upheld a lower court ruling.
A recent South Carolina Supreme Court decision followed the lead of other state supreme courts in not letting a child go forward with a wrongful life lawsuit.
In Willis v. Wu, Thomas Willis' mother, on his behalf, alleged that Donald S. Wu, MD, did not perform timely ultrasound examinations or did not comprehend the significance of the ultrasounds. Consequently, Willis' mother didn't know there was an indication of hydrocephalus at a point when terminating the pregnancy would have been an option, according to court records.
Willis was born with maximal hydrocephalus, a condition in which the parts of the brain that control thinking, motor control, the ability to speak and the ability to move voluntarily are missing.
At birth, a CT scan showed that Willis' head was filled with fluid. There was brain tissue in the frontal and temporal lobes and a brain stem. Physicians placed a shunt in the boy's head at birth to drain the fluid and prevent it from growing larger.
Willis receives therapy at home and school, but he will not be able to take care of himself independently. His physical and mental ability are about the same as they were when he was a few months old.
South Carolina Supreme Court justices said they recognize the "extremely severe nature" of the boy's impairment. But that they still could not justify allowing a wrongful life lawsuit to go forward.
The legal question is a strange one for courts to handle, prompting judges to ask the tough, deep, life questions usually left to philosophers and theologians. In a nutshell: What is the value of life?
The child is saying it would have been better if he or she had never been born.
But, how can a man or woman who does not know what it is like to not exist make a decision of whether it would have been better to never have been born? And if a court did recognize a claim for wrongful life, who would be able to sue? Would someone who has a hearing impairment have a right to a wrongful life lawsuit if he/she said his/her mother would have ended the pregnancy if the condition were known?
In the end, most courts, including the South Carolina Supreme Court, have said that those questions are best left up to academics, not juries. Courts in 19 states have said there is no claim for wrongful life.
The South Carolina Supreme Court became the 20th, and it turned to a biblical reference when explaining its decision.
"Our civil justice system places inestimable faith in the ability of jurors to reach a fair and just result under the law, but even a jury collectively imbued with the wisdom of Solomon would be unable to weigh the fact of being born with a defective condition against the fact of not being born at all". "It's simply beyond human experience".
In a typical medical liability lawsuit, a physician's action or inaction caused the harm.
For example, consider the hypothetical case of an obstetrician prescribing for a pregnant woman a drug that by the standard of care the physician should have known caused birth defects. If the child is born with an impairment, the child would have a traditional medical liability claim.
But the South Carolina Supreme Court and others have said that a wrongful life lawsuit differs from that because the physician's action didn't actually cause the impairment or defective condition with which the child was born.
"Instead, the impairment or defective condition occurred and the health care provider failed to predict or diagnose it, resulting in the birth of a child with a congenital defect" the South Carolina Supreme Court said.
So the question is not what damages the jury would award to someone who has to live a life with a disability. Instead, the court says, the question becomes what damages should the jury award for what it would have been like to not have been born.
It comes back to trying to answer the question of whether it would have been better not to be born at all and trying to attach a monetary value to that answer. "Here the doctor didn't cause the birth defect, and to put a value on it, you would have to look at the value of life", said Stephen Brown, the attorney who represented Dr. Wu.
"Courts don't want to be in a position of saying: "Medical profession, this is all up to you", added Mark P. Strasser, a law professor at Capital University Law School in Columbus, Ohio.
Nonetheless, not every court has outright denied the wrongful life claim. Three courts - California, New Jersey and Washington - have recognized wrongful life actions.
That being said, though, the courts wouldn't allow the children to recover general damages related to what things would have been like if they hadn't been born.
The courts did allow the children to receive money to pay for their medical expenses.
Looked at that way, the California Supreme Court said that it's "hard to see how an award of damages to a severely handicapped or suffering child would disavow the value of life or in any way suggest the child is not entitled to the full measure of legal and non-legal rights and privileges accorded to all members of society".
IV. THE LATEST DEVELOPMENTS
While most countries do not recognize a wrongful life claim, some do recognize a wrongful birth claim. Physicians should be aware of what the laws are in their countries. To defend themselves against potential wrongful life or wrongful birth lawsuits, he said doctors should make sure they offer patients genetic testing and if necessary document when and why a patient may have refused to have a test performed. Record-keeping is extremely important in this area.
As medicine continues to advance, it is hard to predict what philosophical questions might one day be answered that would allow courts to be more willing to let wrongful life cases proceed. As the U.S. District Court in South Carolina, Charleston Division, said in 1980, "scientific and technological advances, together with the changes in moral attitudes that often accompany such advances, may eventually provide a new perspective from which to analyze this position".
But legal experts predict that in the near future, most courts will not let juries tackle the question of whether it would have been better not to have been born.
In the United States, a Pennsylvania family is considering taking legal action against a special education service in what could become one of the most unusual 'wrongful life' or 'wrongful birth' cases in the country.
A family is accusing the Schuylkill Intermediate Unit 29 of failing to supervise their 17-year-old daughter, leaving her alone to have sex several times with a 15-year-old boy. The girl is expected to give birth in July.
Both teens, who were not named in the press for privacy reasons, reportedly have mental disabilities. The girl's mother said they did not have a relationship outside the special education school.
Michael J. Fiorillo, the attorney representing the family, said his clients might sue IU 29 to recover the cost of raising the child, who might also have disabilities.
WNEP reported in April 2005 that the Schuylkill County district attorney' s office has found no evidence of wrongdoing by the education service, and that the girl's mother has filed a formal complaint with the Pennsylvania Department of Education.
In the Netherlands, the Dutch Supreme Court on March 18 ruled that lower courts were correct in ordering a hospital and midwife to pay life-time medical and living expenses to a girl for not performing certain genetic tests on her before she was born.
The court also ordered Leiden University Medical Centre and the midwife to compensate Kelly Molenaar, now 11, and her parents for the emotional injuries they suffered when the girl was born with mental and physical disabilities.
The parents accused the midwife of refusing to run genetic tests which they had requested. The couple said that they likely would have aborted the pregnancy if the tests had turned up a high risk for disabilities in the foetus.
According to a brief story in the British Medical Journal, the court determined that the decision not to perform the tests was a professional error, and were therefore responsible for the girl's medical costs.
This 'wrongful life' suit, as the journal called it, was similar to the case of Nicolas Perruche in France. Molenaar's case has prompted Dutch lawmakers to consider a similar measure.
A primary purpose of wrongful life and wrongful birth claims is to permit disabled children and their parents to obtain compensation for the relatively high costs of caring for children with special needs. A key issue in determining whether such claims should be permitted is the question of how as a society we can best deal with those costs. One option is of course to permit the law of negligence to take care of compensating these individuals through the vehicle of genetic malpractice claims. Given present trends of the law, it is an option which is likely to be actively pursued by many plaintiffs, since it effectively assigns the costs of raising a child with disabilities to the health care provider who denied the mother of the opportunity to choose whether or not to bear the child. The approach is one based on corrective justice - the person responsible for the damage is the one who ought to set matters right by compensating the claimant. However, there are many draw-backs to this private law approach, which are not unique to this particular kind of claim. In particular, negligence law is an extremely expensive and inefficient vehicle through which to provide compensation. The system is slow and expensive, and compensates very few (less than 10%) of those who are legally entitled to compensation as a result of medical negligence.
Given these difficulties, and in particular the underlying cost barriers which prevent litigation being an effective vehicle of compensation, there is a need for alternative avenues of compensation. One is to create better social welfare schemes to assist families who require financial support in raising children with disabilities, thereby reducing their need to resort to the risks and expense of litigation to obtain that financial support.
The right of life is inalienable in our society. A court cannot say what defects should prevent an embryo from being allowed life such that denial of the opportunity to terminate the existence of a defective child in embryo can support a cause of action. A child need not be perfect to a have a worthwhile life. The sanctity of the single human life is the decisive factor in these suits in tort. Eugenic considerations are not controlling. It may have been easier for the mother and less expensive for the father to have terminated the life of their child while he was an embryo, but these alleged detriments cannot stand against the preciousness of the single human life to support a remedy in tort.
The problem of disability should be seen as one of social justice. In particular, we should not distinguish between those disabled who are 'fortunate' enough to have been wronged and therefore have a legal remedy available, and those whose disability is not a consequence of wrongdoing and consequently have no legal remedy or a remedy to compensation.
I do not suggest that we should immunize from liability those in the medical field who provide inadequate guidance to persons who would choose to exercise their right to correct information and the right to abort foetuses, which, if born, would suffer from genetic defects. And no one should denigrate the pain and anger that parents feel when they learn that their child is disabled.
But how can a court compare the value of a life with a handicap to the alternative - never having lived at all? And which handicaps make life not worth living? If blindness and deafness make life unbearable, does blindness in one eye, or deafness in one ear? Does being born with just plain bad eyesight or hearing entitle one to an award? How serious must one's mental retardation be to qualify for compensation? Must it be 'severe', or can a person of mere lower-than-average intelligence recover damages?
It is difficult to answer those questions. But, it has been said, and I agree, that life - every life - is worth living.
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Copyright 2005. Greek/Australian International Legal and Medical Conference.
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