Overcoming the obstacles: a collaborative approach to informed consent in prenatal genetic screening.

social distance built into current ways of looking at 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 new clinic, immunization from 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 field of genetics, but such praise must be approached with caution. Undoubtedly, genetics is receiving increasing attention as 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 proliferation of technology. And public is beginning to expect and require that such information be provided to them in decision-making process in health care arena. At same time, people have come to expect that, with advances in both genetics and medical science, 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 disabled child attempts to show that, had proper procedure been provided, or had the abnormality been detected, pregnancy would not have been initiated or terminated. A wrongful birth claim, on other hand, exists where claim is that health care provider deprived parent, or parents of a child, of accurate information which would have led them to refrain from having child. Both claims stem from a failure to receive information or during pregnancy. With proliferation of potential information engendered by mapping of human genome, what now constitutes adequate information? The informed decision-making process may be complicated further by vast knowledge that progress of genetics seems to provide. The area of genetics is complex and offers 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 present standards of informed consent adequate? Does prenatal screening differ from other medical procedures? This paper will attempt to address these questions. In first part, I will provide an overview of prenatal genetic screening and diagnosis in Canada. The second part will examine obstacles to fully informed consent for prenatal screening and diagnosis and consider whether present test for informed consent can still be applicable in light of these obstacles. The third section will examine obstacles to achieving patient autonomy in decision-making, as an objective of informed consent, in pregnancy and genetics. If goal of informed consent is patient autonomy in decision-making, then how can this goal be achieved in area of prenatal screening and diagnosis? The informational, social, and psychological obstacles to 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 challenges to informed consent presented by prenatal genetic screening and diagnosis. The present standard for informed consent, coupled with principle of non-directiveness, is inadequate given dynamic nature of genetics, uniqueness of pregnancy, and practicalities of a medical practice. …

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