Overcoming the Obstacles: A Collaborative Approach to Informed Consent in Prenatal Genetic Screening

Article excerpt

"The social distance built into current ways of looking at the human body--the view of an objective scientist looking at another bodily object that is clearly separate and distinct--will be expanded to include a new type of social connectedness, where two human beings will be able to share their commonly felt experiences at their social membrane. In the new clinic, immunization from the emotional experiences of one's fellow man will no longer be seen as either a vital necessity or a particularly virtuous aspect of scientific objectivity." (1)

The Human Genome Project has brought with it incredible and rapid advances in the field of genetics, but such praise must be approached with caution. Undoubtedly, genetics is receiving increasing attention as the ability to detect genetic predispositions has increased and continues to do so. The amount of information that is available, or rather that seems to be available, to physicians is proliferating, along with the proliferation of technology. And the public is beginning to expect and require that such information be provided to them in the decision-making process in the health care arena. At the same time, people have come to expect that, with the advances in both genetics and medical science, the children they bear should be as close to "normal" as scientifically possible to predict. This has resulted in wrongful birth and wrongful life lawsuits, which fall under claims of medical malpractice, a subset of negligence law. (2) A wrongful life claim is advanced where the disabled child attempts to show that, had the proper procedure been provided, or had the" abnormality" been detected, the pregnancy would not have been initiated or terminated. A wrongful birth claim, on the other hand, exists where the claim is that the health care provider deprived the parent, or parents of a child, of accurate information which would have led them to refrain from having the child. Both claims stem from a failure to receive adequate information or "informed consent" during pregnancy. With the proliferation of potential information engendered by the mapping of the human genome, what now constitutes "adequate information?"

The informed decision-making process may be complicated further by the vast knowledge that the progress of genetics seems to provide. The area of genetics is complex and offers the potential for so much more information than may actually be required or available to make an informed decision about medical care. With new technologies, new questions must be addressed, and old standards may have to be re-evaluated. In an era of constantly developing genetic techniques and prenatal genetic screening and diagnostic testing, are the present standards of informed consent adequate? Does prenatal screening differ from other medical procedures? This paper will attempt to address these questions. In the first part, I will provide an overview of prenatal genetic screening and diagnosis in Canada. The second part will examine the obstacles to fully informed consent for prenatal screening and diagnosis and consider whether the present test for informed consent can still be applicable in light of these obstacles. The third section will examine the obstacles to achieving patient autonomy in decision-making, as an objective of informed consent, in pregnancy and genetics. If the goal of informed consent is patient autonomy in decision-making, then how can this goal be achieved in the area of prenatal screening and diagnosis? The informational, social, and psychological obstacles to adequate informed consent for prenatal genetic screening will be considered. The final part of this paper will consider how a patient' s reproductive and decisional autonomy can be best fulfilled having regard to the challenges to informed consent presented by prenatal genetic screening and diagnosis. The present standard for informed consent, coupled with the principle of non-directiveness, is inadequate given the dynamic nature of genetics, the uniqueness of pregnancy, and the practicalities of a medical practice. …