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.

The world risks “scientific apartheid” between rich and poor countries unless research and technology is better used to benefit the poor, says one of Africa’s leading science experts. (SciDev)

Last week in Discoblog, we discussed a case involving a 15-year-old boy, Alex Koehne, whose undiagnosed lymphoma was spread to four other people through the transplanting of his organs. Two of the organ recipients have died, and the other two are undergoing treatment.

So how could multiple organs carrying disease be harvested and transplanted without anyone’s noticing? (DISCOVER Magazine)

The network builds on cancer research centers first established in 2002 to bring laboratory advances quickly to patients. Each center will receive $4 million from the Department of Health and Cancer Research United Kingdom to develop new treatments. (Associated Press)

Shvarts told classmates that she had herself artificially inseminated as often as possible for much of this past year, then took legal, herbal abortifacient drugs and filmed herself in her bathtub cramping and bleeding from the miscarriages. She said her work will include video, a sculpture incorporating her blood mixed with Vaseline wrapped in plastic, and a spoken piece describing what she had done. (Washington Post)

Under the initiative, the Pentagon launched the Armed Forces Institute of Regenerative Medicine made up of two teams — the first led by Wake Forest University in North Carolina and the University of Pittsburgh and the second led by Rutgers University in New Jersey and the Cleveland Clinic. (Reuters)

The U.S. government will soon begin collecting DNA samples from all citizens arrested in connection with any federal crime and from many immigrants detained by federal authorities, adding genetic identifiers from more than 1 million individuals a year to the swiftly growing federal law enforcement DNA database. (Washington Post)

British scientists are to spearhead an attempt to preserve the genes of a rhino in captivity by using a technique that mixes its skin cells with the embryos of a close cousin, the southern white rhino, which is not so endangered. The resulting offspring will be “chimeras” with a mixture of cells from both sub-species, but it is hoped that some of them will grow up to produce the sperm and eggs of the northern white rhino and so boost the animal’s dwindling gene pool. (The Independent)

Without using an egg, researchers have been able to reprogram certain mature cells back to an embryonic-stem-cell-like state, a new report says. (HealthDay)

$85 Million Federal Grant Announced for Orthopaedic Stem Cell Surgery Using Patients’ Own Cells. (ABC)