On The Interface Of Science And Torah Ethics Human Genomics: Scientific Achievement and Ethical Dilemmas
Latest update: November 7th, 2012
“G-d formed man from the earth and breathed into him a living soul.”
The greatest achievement of the biological sciences since that moment in creation has been the Human Genome Project, a massive effort by thousand of biologists, chemists and physicists who isolated and identified the 24,000 genes that Hashem placed in Adam and Eve, and through them in each of their descendents. These genes direct the formation of all our physical and mental attributes. Despite having the same genes, however, we are not all identical. When compared to the genetic make-up of the “reference human,” whose gene sequences were published at the completion of the Human Genome Project, every individual’s genome has about four million variations, some of which predispose to disease or determine response to a specific treatment. “Personal Genomics” is the goal that medical geneticists hope to achieve under which specific treatment for a disease would be determined by studying the whole genome sequence [WGS] of a patient.
The WGS is a non-invasive test requiring only some blood or saliva. Such testing now exists for analyzing fetal DNA from pregnant women. Unlike amniocentesis, which needs fluid removed from the sack (amnion) that surrounds and protects the developing fetus and may cause a spontaneous abortion, these new tests need only a few drops of blood from the mother to isolate fetal DNA, and a swab of the father’s saliva. Three commercial labs launched versions of this test in the past twelve months and last June, researchers at the University of Washington used this non-invasive test to “read” the entire genome of an 18 week fetus.
This magnificent advance in the study of the human genome poses an ethical challenge to all who are guided by Torah law. Even our current primitive ability to study the genetics of a fetus, to determine if it carries the genetic Down’s Syndrome, has resulted in the abortion of 90% of those so identified. Testing 24,000 genes for “normalcy” will surely result in a massive increase in abortions. Current obstetrical practice routinely includes an ultrasound scan of the developing fetus. Under instruction from their liability insurance company to avoid suits for “unlawful birth” doctors must report to parents’ every minor deviation from the idealized norm. If such deviations are reported, worry and fear supplants the joy of pregnancy until, as almost always, a normal, healthy child is born.
What will be the decision of young parents who planned on a family of three children- two of whom are home in bed and one in utero? Why risk the tragedy of a genetically defective child being born? Cancel this one and try again in a few months!
Torah Law is unambiguous! Aborting even the earliest pregnancy violates biblical law. Some who follow the dictates of halacha are misled by the reference in the Talmud to an embryo before 40 days of gestation as “maya b’alma,” which they translate incorrectly as “merely water.” The reference is to the unformed stage of development (like water without form) and is not intended to impugn the embryo’s claim to life. When the health of the mother is endangered, the halacha differentiates between a pre- or post-40 day gestation. The halacha, however, defends the implanted embryo’s claim to life even if it requires transgressing Torah Law, come the Sabbath, to obtain medical care that would prevent the termination of the early pregnancy.
There is another ethical dilemma to evaluate. Is knowledge an absolute good? Must everyone be aware of every potential mishap that may occur because of some genetic flaw harbored in his genome?
Indeed, most would agree that it is better not to know of the presence of a catastrophic gene such as the gene for Huntington’s Disease which destroys the brain by age 50 and for which there is no cure. But there are many who prefer to have a life of simple faith in Hashem knowing that His kindness will protect from all evil. They do not want to know—hence the dilemma. When one member of a family undertakes a WGS study, it reveals information about every other close relative. To tell them the test results imposes the burden of knowledge that they prefer not to bear. To withhold genetic information such as the presence of cancer genes which predispose to the disease prevents them from taking necessary precautions such as frequent medical examination or early pharmacological or radiological intervention that be life saving.
Throughout our glorious history, the Torah leadership of our nation offered their insights for the resolution of ethical dilemmas. We await their advice and instructions in this dilemma as well.
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