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INTRODUCTION

Eugenics, and the fear thereof, are common themes in ethical discussions of genomic technologies during reproduction that many are not quite proficient at discussing. Leaving aside concerns about creating super-people, let us simply consider the application of genetics to bona fide diseases. Preventing lethal infections is hardly controversial, and no one advocates against vaccination on the grounds that people with Pertussis represent an important facet of humanity we would be poorer without, and few believe we should “leave nature alone” and accept serious infections. One might therefore call a disease a disease, regardless of the cause, and would say a distinction between infectious and inherited disease is a false dichotomy. But perhaps because our genes make us who we are, selecting against certain genes, no matter how cruel the phenotype, gives many the sensation that humanity is meddling where it shouldn't with feelings that are not aroused by other fields of medicine. Are we changing who we are rather than how the outside world affects us? The greatest challenge of the coming genomics era, when we can sequence and even change our genes with ease, will be for society and individuals to mature in our understanding of basic ideas such as self, family, choice, and worth as we wield more control of our fundamental biology that until now was in the hands of evolution, chance, and the Divine.

Either way, it is difficult not to admit that the broad demand for genetic screening for inherited/genetic diseases implies that many societies value health over disability, whether intrinsic (i.e., genetic) or extrinsic. Recognizing and confessing our own biases, even as medicine churns out newer and better screening tests, is essential for any practitioner to provide sensitive and balanced care and counseling for patients regarding inherited disease.

Inevitably, as payers increasingly cover expanded carrier screening, and have no choice but to cover increasingly available (and very expensive) therapies for children with genetic diseases, some payers will attempt to control costs by offering to cover PGD completely to prevent the birth of sick and expensive children. This would be tremendously empowering for families that could not otherwise afford to have a healthy child, but would also greatly increase the frequency with which embryos were actively decided to be unfit to be implanted or born. Such selection is completely legal and available today to those who can pay for it, but increased availability (and possibly public funding) are at least psychologically more salient for a society and are likely to stir more heated discussion and disagreement.

Diseases that kill in the first days of life are less controversial as targets of carrier screening, and likewise eye color is not (to our knowledge) a trait on which any reputable reproductive specialist would agree to base the selection of an embryo. There are, however, gray zones of diseases that are harder to categorize. Is a heightened risk of Alzheimer disease ...

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