ARTICLE: Better to never have been born? A look at wrongful life litigation

[Guest guest]

Better to never have been born? A look at wrongful life litigation

By Sherry F. Colb

FindLaw Columnist

Special to CNN.com

Friday, May 23, 2003 Posted: 4:44 PM EDT (2044 GMT)

(FindLaw) -- In the Brave New World of reproductive technology, the

possibilities are endless. But when mistakes are made, things can go terribly

wrong.

That is what happened in the case of phine and Gerard Paretta. The couple

visited a fertility treatment center to pursue in vitro fertilization with an

egg donor. Unbeknownst to the Parettas, however, their chosen egg donor was a

carrier of cystic fibrosis (CF), a serious genetic disorder for which a patient

often requires surgery, medication and intensive care throughout his or her

life. Gerard Paretta, the father and sperm donor, turned out to have been a

carrier of CF, as well.

In a tragic outcome that perhaps should not have come as a surprise to their

doctors, the baby that was conceived and implanted in phine Paretta was

born with the disease. Her parents named her Theresa. The Parettas and their

child subsequently brought a lawsuit against the doctors for failing to reveal

the egg donor's carrier status and for failing to test Mr. Paretta for the CF

gene. The New York trial court held -- in the case of Paretta v. Medical

Offices for Human Reproduction -- that the parents could go forward with their

negligence suit against the doctor. The court refused, however, to permit the

baby's lawsuit to go to trial. This ruling was based on flawed philosophical

assumptions about the nature of existence. An earlier New York decision also

was

in error In Becker v. Schwartz, a 1978 decision that did not involve fertility

treatments, the New York Court of Appeals -- the highest judicial body in New

York -- confronted a related issue. In that case, a mother and father sued

their doctors in their child's name, because the doctors had failed to inform

them that older pregnant women run a heightened risk of delivering a baby with

Down's Syndrome. The doctors also failed to test for the condition during the

mother's pregnancy. As a result of these failures, the woman did not learn of

her child's mental handicap until after the baby was born. The court dismissed

the child's complaint, holding that no one has the right to be born free of

disease. In Paretta, the New York court decided that the earlier precedent in

Becker disposed of the question whether a child could sue her mother's doctor

for wrongful life. The Paretta court said that the same rights should attach to

children conceived naturally as attach to children conceived through assisted

reproductive techniques. Both Becker, the earlier precedent, and Paretta, the

current case, were wrongly decided. The morally agonizing nature of wrongful

life suits wrongful life suit, by definition, raises painful and deeply

troubling questions about the value of human life. People bring such suits

against

their doctors only when they feel that they were harmed in some way because

their child was born. Had the doctor done his job properly, the claim goes,

this child would not exist. There is no way to avoid entirely the normative

implications of such a statement. The least controversial form of wrongful life

litigation occurs when a doctor performs a surgical sterilization or its

equivalent, and the couple subsequently conceives and has a child. By suing

under

those circumstances, the couple indicates that however much they love their

child, the doctor obviously failed in surgically preventing conception and

should

bear some of the cost of that failure. The parents have nothing against their

child in particular; they just did not want to have a child. The more

gut-wrenching form of wrongful life litigation occurs when the parents in

question do

want a child. They just don't want this child. The message here is far more

personal to the specific baby born to them.

To say this, of course, is not to detract in any way from the suffering of

families whose children come into the world with illnesses and abnormalities. It

is only to point out that the wish implicit in the lawsuit -- a wish that is

at least comprehensible to most people -- is that the baby in question had

never been born. The difference between wrongful life litigation and other

personal injury suits suing a doctor for wrongful life is thus very different

from

suing a doctor because one's child is sick as a result of the doctor's

negligence. In the latter case, a doctor might, for example, have used forceps

during

delivery in a negligent fashion and thereby blinded the child or impaired the

use of a limb. The existence of the child goes unquestioned; the only issue

is the harm that the doctor did to that child (and therefore to the child's

family). A sickness that is genetically programmed into a child, by contrast,

can only be " prevented " (given current medical technology) by preventing the

child himself from coming into existence. Due care in the practice of medicine,

in other words, represents the care a doctor might take to help a family avoid

the child's being born at all. It is crucial to understand this essential

feature of wrongful life litigation if one is to grapple with the moral

questions

that it raises. The case for wrongful life recovery Despite the implicit

claim that their child should not have been born, families that bring such suits

can legitimately assert that their suit is primarily about the distribution of

expenses. They can honestly say that they love the child they now have and

will do what is necessary to take care for him. Such care, though, will be

costly, however willing they are to undertake it. Furthermore, the costs

involved

are ones that their doctor was causally responsible for imposing. A woman who

-- as alleged in Becker -- would have aborted a fetus with Down's Syndrome --

as it was her legal right to do -- would have benefited from the knowledge that

women over 35 are at increased risk of giving birth to a Down's baby. She

would also have benefited from undergoing testing that reflects this heightened

risk. Similarly, the doctor in the Paretta case who brought together the sperm

of Gerard Paretta and the egg of a donor, when both carried the CF gene,

allegedly acted in a medically negligent manner. The plaintiffs claim that it

was

the doctor's obligation to have revealed the donor's CF carrier status and to

have performed genetic tests that would have exposed Gerard's status. The

doctor then should have informed the patients of his findings and helped them

select an alternate donor. However much a family loves its baby, the costs of

caring for a child suffering from CF are debilitating and accrue as a direct

result of the doctor's alleged negligence. Therefore, the expenses should be

shifted -- at least in part -- to the person whose errors were responsible for

that

state of affairs.

The error alleged in Paretta may be more egregious, moreover, than the

alleged error in the 1978 Becker case. From the perspective of most people, the

decision not to combine a particular person's sperm with another particular

person's egg in a laboratory is far easier, and less freighted, than the

decision to

terminate a pregnancy in the second trimester due to a positive result for

Down's Syndrome. A woman might therefore decide to bear a Down's baby, even

after having an amniocentesis done with the intention of terminating such a

pregnancy. It is far less likely, however, that a couple -- knowing that an egg

donor carries a genetic disease -- will choose nonetheless to receive an egg

from

that donor for fertilization and implantation. In the in vitro case, it was

the latter decision of which the doctors -- allegedly through negligence --

deprived the couple in question.

What about the baby? Once we allow that there are valid reasons for people to

sue for the " wrongful " existence of their child, the question arises whether

the child himself should also be able to sue the doctors that helped create

him.

Consider what a child who brings such a suit is claiming. He is saying

something along the following lines: " I, the child who should not have been

born,

hereby sue the doctor whose negligence led to my existence. " At first glance,

such a claim might seem incoherent. Ordinarily, when we bring a lawsuit, we

have two contrasting scenarios in mind. The first scenario is the present

reality, in which -- as a result of someone's negligent or intentional

misconduct --

we have suffered an injury for which we wish to be compensated. The second

scenario is a hypothetical, counterfactual scenario, in which the defendant

refrained from his misconduct, and we did not suffer the injury. It is the

disparity between these two scenarios that allows damages to be calculated.

To make this contrast clearer, consider the following example. Jane Doe goes

to her doctor with an ear infection. The doctor prescribes an antibiotic

called " bactrim, " after failing to look at Jane's chart, which indicates clearly

that Jane is allergic to bactrim. As a result, Jane suffers serious respiratory

distress and fever for a week, until the doctor figures out that the bactrim

is causing her suffering. Jane subsequently sues the doctor. In what I have

called the " first scenario, " Jane has suffered pain, discomfort, and a

substantial risk of death because of her doctor's negligence. For this, she

wishes to

be compensated. In the second, counterfactual scenario, Jane's doctor looked at

her chart before prescribing, gave her amoxicillin instead of bactrim for her

infection, and all was well. It is then the disparity between Jane's

condition in the first scenario and Jane's condition in the second that gives

rise to

her cause of action against the doctor. But what if the patient's complaint

against the doctor is that she, Jane, exists? In scenario one, the doctor

failed to prevent the birth of the child, and the child therefore came into

existence with a genetic condition such as Down's Syndrome or Cystic Fibrosis.

In

scenario two, there was no pregnancy (because of genetic testing) -- or there

was a pregnancy, but it was terminated after a positive test for Down's

Syndrome. Either way, in scenario two, the patient does not exist. It is the

disparity between these two scenarios -- a painful existence and no existence at

all

-- of which the patient complains. How do we calculate which of these two

scenarios is better for the person whose existence is at issue? And further,

what

does it mean to say that it would have been better for a person not to have

been born? Not such a strange question, after all

The reason it seems strange to pose such a comparison is that it is in some

sense meaningless to speak of what it would be like for Jane Doe if Jane Doe

did not exist. There would, by the very premise of the question, be no Jane to

experience the state of not existing. That does not, however, necessarily mean

that it is incoherent to compare existence with nonexistence.

Most of us believe that suffering is an evil, and that when suffering becomes

intense enough, it might be worse than death. The prospect of death, for

example, might not induce a prisoner of war to talk, but the threat of torture

could. It is accordingly comforting to learn that a loved one's death was

" mercifully quick " rather than lengthy and painful. These sentiments express

the

view that at least under some circumstances, nonexistence might be better for

the

person who does not exist than life. It is not that the dead person has an

identity in which he suffers less than his alter ego, the living and suffering

version of him. Rather, it is that the suffering of the existing person is so

great as to make life not worth living anymore, from that person's own

perspective.

When life is experienced in that way, then it makes perfect, tragic, sense

for the person in question to wish either that he were dead (and thus in a state

in which he ceases to exist at all) or that he had never been born in the

first place. In a poem written in his later years, for example, nineteenth

century philosopher Heinrich Heine said: " Sleep is lovely, death is better

still,

not to have been born is of course the miracle. " All this is not to say that a

plaintiff who suffers and wants to recover damages necessarily wishes that

she had not been born. It also does not mean that in some cosmic sense, the

plaintiff " should " not have been born. To acknowledge that suffering may be

greater than would justify existence, however, is to say that there are burdens

and

expenses that will be borne by the person who comes into existence (and not

just by her family). Furthermore, because her disorder is physiologically

inseparable from her existence, those expenses are associated directly with that

existence. By bringing a suit, she claims that the doctor whose negligence

brought her into being should therefore have to bear at least some of the

resulting

financial costs. One might say that many people who exist believe their

parents made a selfish and bad choice to give birth to them. How many teenagers

have said to their parents in anger, " I never asked you to have me, so don't

expect me to be grateful that you did! " Because of the physical invasiveness

of deciding otherwise, our courts have held that a woman has an absolute right

to bear a child with whom she is pregnant, no matter how difficult that

child's life will be for him. The doctor, however, has no such right to bring

people into existence. Therefore, when he does, and his actions negligently

eliminate choices that families currently have the right to make, he ought to be

held

responsible for his actions. That responsibility extends, moreover, not only

to the parents whose decision it should have been whether to have the child

but also to the child whose suffering (and whose very existence) can be

attributed to the doctor's mistakes.

Joanne Schum

twoluckylungs@...

Bi- lateral Lung Tx 9/12/97

Univ of North Carolina Chapel Hill

Joanne M. Schum

Cystic Fibrosis

Bi-lateral Lung Recipient

September 12, 1997

University of North Carolina Hospitals Chapel Hill

Residence: Upstate New York

email: luckylungsforjo@...

Manager of:

http://groups.msn.com/TransplantSupportLungHeartLungHeart

" Taking Flight - Inspirational Stories of Lung Transplantation "

Compiled by Joanne Schum

Authored by lung recipients around the world

http://www.trafford.com/robots/02-0497.html

http://www.trafford.com/