Whose Normality?
April 18, 2008
Recently a baby with two faces – two pairs of eyes; two pairs of lips, two noses and one pair of ears – was born in India. Were they devastated? No. Indeed, the female infant, Lali, is seen as being a reincarnated god or goddess (variations due to differing news sources).
The report in The Guardian states
The child’s 19-year-old mother, says that she has “accepted the way she is and so will the rest of the world. Why should [I regret], after all God formed her features and it is he who decided how she should be.” The family, who are poor and largely illiterate, do not believe modern science can help their child and are already building a small temple to the girl in the village.
So here is a newborn with a markedly abnormal appearance (Craniofacial Duplication) received as a gift by a poor and apparently illiterate family. The hand that rocks the cradle of this baby is pleased to do so.
This stands in marked contrast to typical American norms. Only a short while ago at a conference within the confines of our shores, I heard one health care provider’s response to a discussion of Huntington’s Disease. This disease is an autosomal dominant one, in which only one copy of the gene is needed to produce disease. Huntington’s Disease typically appears in mid-life, and is characterized by a progressive neurological deterioration till death. When this particular individual realized that a blood test could diagnose the presence of the gene, he was very pleased. If preimplantation genetic diagnosis (available for embryos formed through in vitro fertilization) is used, those embryos could not be implanted. If the test were done as a prenatal screen, then those fetuses could be aborted. For those people already born, they could simply be prevented from reproducing. Within a short while, “we could eliminate this entire population!†the man exulted.
How do we process this well? Is life a gift to be received? Or is this concept relegated peculiarly to the “poor and largely illiterate populace� Is it only the “normal†life that is to be received with thanksgiving? Then, of course, the question becomes, “Who defines ‘normal’?†Is normal equal to “without disease or abnormality� If so, when? Is normal to be born without disease, or to be born with no disease or disorder present at birth, AND no genes for known disorders that will develop later in life, like breast cancer, familial polyposis of the colon, or Huntington’s Disease?
When the majority of the human genome was published in February 2001, the director of the National Human Genome Research Institute, Francis Collins, compared the genome to a multi-purpose book: “It’s a history book – a narrative of the journey of our species through time. It’s a shop manual, with an incredibly detailed blueprint for building every human cell. And it’s a transformative textbook of medicine, with insights that will give health care providers immense new powers to treat, prevent and cure disease.”
Francis Collins was correct: knowledge of the human genome — through use of genetic testing — does indeed “give health care providers immense new powers to treat, prevent and cure disease.” Yet in our quest to alleviate suffering, how far do we go? Does eliminating suffering include eliminating the sufferer, or an entire population of sufferers? I am particularly concerned that the line between normality and suffering will in actuality be an ever-decreasing diameter of a circle, which will define who is “in,†and irrevocably, who is “out.†If we do not proceed wisely, it will be no longer the hand that rocks the cradle, but the hand of the one who interprets the genetic test, that rules the world.
