Guest Writer Profile: Rose Muto Rose Muto is currently completing her LLB at the University of Alberta and will graduate in the Spring of 2003. Rose graduated with a Bachelor of Arts in the Political Science, Philosophy and Economics Program at Okanagan University College in Kelowna in April 1999 and is presently working as a research assistant with PHEN's Nortnern Alberta Office. Rose's long-term goal is a career in law and ethics with specific focus on health issues. Outside of school and work, Rose enjoys hiking, biking, tennis and gourmet cooking.

Prenatal genetic testing raises some very difficult questions. For example, is it appropriate for parents to abort fetuses that have genetic abnormalities? What are the obligations borne by genetic counselors and physicians when it comes to what information should be disclosed to potential parents, and how it should be disclosed? When a child is born with sever disabilities that were identifiable but not disclosed, what recourse should parents have? Ought a child be able to demand reparation from society for being born at all, if s/he believes that her/his life is worse than had s/he never existed at all?

While society comes to terms with these difficult questions, individuals are turning to the law for solutions. The law, in turn, has had to balance avoiding placing a negative value on the lives of disabled people against providing avenues (through traditional tort law) that allow individuals to be compensated for their doctors' or genetic counselors' negligence in failing to disclose information.

Tort Law and Terminating Pregnancy

Tort law provides a remedy to individuals who are harmed by the wrongful actions or omissions of others. Individuals are able to collect damages as compensation for ills done to them - the objective being to attempt to restore the harmed party to the position occupied before the negligence occurred. The worry in tort law is that damages are often difficult to assess because most times, money alone cannot replace the loss or repair the harms that an individual has suffered.

Based on the tort law tradition, Wrongful Birth and Wrongful Life actions have the same logical conclusion - that is, "but for the doctor's negligence" (nondisclosure of information), pregnancy would not have been carried to term, parents would not have to incur the extra costs associated with raising a child with disability, and the child would not have a disability because s/he would not have been born in the first place.

Legally, parents receiving information with regards to the risks of the pregnancy have the right to choose whether or not to terminate pregnancy. Wrongful Birth actions are raised by parents of disabled children who claim that their doctor failed to disclose the material risks of disability during pregnancy. The results, they often argue, are the unanticipated costs, both monetary and emotional, associated with raising a child with a disability. In contrast, Wrongful Life actions are brought by, or on behalf or, a child claiming that the doctor's failure to disclose material risk denied his or her parents their right to choose to terminate the pregnancy.

Concern with the Tort Law Approach

In some instances, the results of the compensatory model of tort law appear ethically unjustifiable. By accepting the arguments in Wrongful Birth and Wrongful Life on the grounds that it is better to not have been born than to have been born disabled, the courts have been accused of assigning negative value to life with a disability. If these actions are accepted by the court, they risk sending the message that the value of a human being who is not "disabled" is greater than the value of that human being who does live with a disability.

The courts' response, however, has been to deny endorsement of this valuation. Rather, they have tried to distinguish between the two actions, accepting Wrongful Birth actions for compensatory reasons and rejecting Wrongful Life actions for policy reasons.

Wrongful Birth

In Wrongful Birth cases, the courts have been adamant that a decision in favour of the claimant is not based on the idea that disabled children are somehow less deserving of love or not worth raising. Rather, rulings indicate the belief that parents who did not expect, or could not afford, to raise a child with a disability should be compensated for the unanticipated costs of bringing up that child. Similarly, parents confronted with an unwanted pregnancy due to their doctor's negligence should be compensated for the unanticipated costs incurred where these are judged by the court to be burdensome. Thus, in a recent case in Alberta (M.S. v. Baker) the court determined that parents who gave birth despite a failed sterilization and could not afford to support the child were entitled to damages, even though the child was born healthy.

In the case of Ardnt v. Smith (Nelson and Robertson), Ms. Ardnt contracted smallpox during her pregnancy and was told by her physician that this would pose no risk to her unborn child. Nevertheless, Ms. Ardnt child was born with an abnormality. When this case was brought to court, the judge ruled that the doctor was negligent in failing to disclose all relevant information to Ms. Ardnt. However, the judge did not award damages in this case based on the assessment that a "reasonable" person in Ms. Ardnt's position would not have terminated the pregnancy, given the very small risk that the child would be born with an abnormality. While Ms. Ardnt was unable to collect damages, the courts recognized that, based on a reasonable possibility that a child will be born with a disability, parents have the right to choose whether or not to terminate a pregnancy.

Wrongful Life

Wrongful Life actions, on the other hand, have been rejected by the courts because they do not fit within this compensatory scheme and, if accepted, would indeed connote that life with a disability is of relatively less value. For example, in the case of McKay v. Essex, the courts rejected the Wrongful Life action, "because 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 that it is not worth preserving" (Nelson and Robertson). In other words, the court was evaluating the Wrongful Life claim against the tort law objective of returning the injured party to its pre-injury condition.

It would be impossible to put the child back to the position they would have been in prior to the negligence because doing so would involve putting them into the position of non-existence. Given this model, the court cannot assess damages as the child could not have had any expectations if s/he did not exist. Even if the court were to ignore the tort model, maybe by constructing a "birth cohort" to compare the child's expectation with, the actions would still be denied. The court refuses to suggest the negative valuation that it would be better for the child to not have existed than to exist in his/her current condition.

Closing Thoughts

I suggest that the way the courts have dealt with these actions brings to light a key moral distinction - that between having a fair expectation of what raising a child will involve and suggesting that a given life is not worth bringing forth.

Once a child is born, it is essential that we accept the inherent value of that child. Regardless of the particular strengths or weaknesses an individual possesses, s/he has a legitimate place in our society, based on her or his moral equality with the rest of us.

We can (and should) provide compensation for parents who, based on information they received from medical experts, were not expecting to incur certain extra costs of raising a child (healthy or disabled); but we cannot proclaim that a particular child's life is any less valuable than the life of any other child and that they would have been better off not to have been born. Wrongful Life actions must be consistently rejected on the ground that they are not about compensation but about placing negative value on certain human lives.

References

Green, Ronald. "Prenatal Autonomy and the Obligations Not to Harm One's Child Genetically." (1997) 25 Journal of Law, Medicine & Ethics at 6.

Kelly, Michael B. "The Rightful Position in 'Wrongful Life' Actions. (January 1991) The Hastings Law Journal at 507.

M.S. v. Baker, 2001 ABQB 1032.

Nelson, Erin and Gerald Robertson. "Liability for Wrongful Birth and Wrongful Life." (Autumn 2001) 21,3 ISUMA at 103.

Shapiro, Amos, "Wrongful Life Law Suits for Faulty Genetic Counseling: Should the Impaired Newborn be Entitled to Sue?" (198) 24 Journal of Medical Ethics at 374.

 

Announcements

• The Network is pleased to welcome three new members to the PHEN Board. Gordon McPherson, Board Member, Headwaters Health Authority; Maureen O'Brien, Interim Medical Director, Clinical Ethics, Calgary Health Region; and Jean Graham, Chair, David Thompson Health Region, have all been named to the Board by the Provincial Health Authorities of Alberta
  
  

• Jannice Wong, who has been with PHEN since 1999 serving as the Webmaster for the PHEN website, will move to assisting with PHEN's website on a project by project basis. Jannice is in the final stages of completing the requirements for her Professional Engineer designation and is working full time with the City of Calgary. We thank Jannice for the contribution she has made to the Network and wish her great luck with her academic and professional work.
  
  

• The Health Law Institute at the University of Alberta will be holding a conference entitled Precedent And Innovation: Health Law In The 21st Century on September 27 & 28, 2002 at the Hotel Macdonald in Edmonton. Call (780) 492-8343, email hli@law.ualberta.ca or visit www.law.ualberta.ca/centres/hli for more information. The conference will cover the board spectrum of health law issues and will feature student poster presentations. The conference will include the annual Picard lecture, which will be open to the public.